Normality and Disability

Intersections among Norms, Law, and Culture

Gerard Goggin, Linda Steele, Jessica Robyn Cadwallader, Gerard Goggin, Linda Steele, Jessica Robyn Cadwallader

• Publisher: Routledge
• Year: 2018
• Print ISBN: 9780367891503
• eBook ISBN: 9781351400190
• Topic: Social Sciences
• Subtopic: Sociology
• Index: Social Sciences

Hotly contested, normality remains a powerful, complex category in contemporary law and culture. What is little realized are the ways in which disability underpins and shapes the operation of norms and the power dynamics of normalization.

This pioneering collection explores the place of law in political, social, scientific and biomedical developments relating to disability and other categories of 'abnormality'. The contributors show how law produces cultural meanings, norms, representations, artefacts and expressions of disability, abnormality and normality, as well as how law responds to and is constituted by cultures of disability. The collection traverses a range of contemporary legal and political issues including human rights, mercy killing, reproductive technologies, hate crime, policing, immigration and disability housing. It also explores the impact and ongoing legacies of historical practices such as eugenics and deinstitutionalization.

Of interest to a wide range of scholars working on normality and law, the book also creates an opening for critical scholars and activists engaged with other marginalized and denigrated categories, notably contesting institutional violence in the context of settler colonialism, neoliberalism and imperialism, to engage more richly and politically with disability. This book was originally published as a special issue of the Continuum journal.

Fit or fitting in: deciding against normal when reproducing the future

Roxanne Mykitiuk and Isabel Karpin

ABSTRACT
‘Normal’ is a contentious term. Descriptively, ‘normal’ represents ‘what is’ as a statistical average. However, the term also represents normative or prescriptive content about what is ‘right’ or ‘what should be’. Correspondingly, abnormality is a deviation from the norm. It is both a factual exception to the average and a value judgement about what is a ‘wrong’ state of being. Pursuing ‘normal’ or deciding against it can be a defining moment in the high technology environment of assisted reproduction. Here, we explore notions of normalcy articulated through legal and policy regimes around screening and testing of gamete and embryo donors. We draw on the work of disability scholars and the diversity of responses to the idea of normal that were registered by four women interviewed in our studies. Three of the interviewees had used or were intending to use donated gametes and the fourth had intended to donate her embryos. We demonstrate how the choice of a particular donor may reveal ingrained or structural prejudice that reconstructs difference as disability. Equally, however, it may reveal a multitude of ways in which difference or deviation from a normative standard is incorporated as a normal part of family formation.

Introduction

‘Normal’ is a contentious term. Descriptively, ‘normal’ is a way of representing ‘what is’ as a statistical average, however, the term also represents normative or prescriptive content about what is ‘right’ or ‘what should be’. Correspondingly, abnormality is a deviation from the norm. It is both a factual exception to the average and a value judgement about what is a ‘wrong’ state of being (Taylor and Mykitiuk 2001). Pursuing ‘normal’ or deciding against it can be a defining moment in the high technology environment of assisted reproduction. In this article, we explore notions of normalcy articulated through legal and policy regimes regarding screening and testing of gamete and embryo donors. To do this, we draw on the work of disability scholars and the diversity of responses to the idea of normal that were registered by four women interviewed in studies undertaken by the authors. (ARC DP 986213: Enhancing Reproductive Opportunity 2009–2013; ARC DP 15010157: Regulating Relations 2015–2018). Three of the women were interviewed because they had used, or were intending to use, donated gametes and the fourth had intended to donate her embryos. All four had encounters with donor selection systems and genetic testing regimes. Our research suggests that in some cases, the choice of a particular donor may reveal ingrained or structural prejudice that reconstructs difference as abnormality. Equally, however, it may reveal a multitude of ways in which difference or deviation from a normative standard is incorporated as a normal part of family formation.

Screening and testing protocols for donated gametes

Assisted Reproductive Technology (ART) clinic testing and screening protocols for donors exist to ensure they and/or their gametes are unaffected by genetic anomaly, infectious disease or psychological illness. They are often more rigorous for donors than for people who reproduce with ART using their own gametes. These guidelines and practices reflect a conception of what, in the clinical context, is considered to be ‘normal’ in both the descriptive and prescriptive sense. Nevertheless, screening and testing practices vary quite markedly across clinics and jurisdictions suggesting that there is no clear consensus about what constitutes a ‘normal’ or ‘healthy’ donor or donated gamete.

Australian clinics have both a domestic and imported supply of gametes for reproductive use and must comply with the Australian Reproductive Technology Accreditation Committee Code of Practice, the National Health and Medical Research Council guidelines on Assisted Reproduction and State based legislation. Apart from standard disease transmission controls there are no specific requirements regarding testing or screening though most clinics have extensive screening and testing regimes. IVF Australia, for instance, tests sperm donors’ chromosomes and for genetic conditions such as cystic fibrosis, sickle cell disease, and other conditions depending on ethnic background (http://www.ivf.com.au/fertility-treatment/donor-program/require-a-sperm-donor). In the United States, the UK, and Europe a range of protocols and regulations operate for donated gametes. In Europe, for instance, under the European Union Directive on Human Tissues and Cells, ‘gamete donors should be screened (tested) “for autosomal recessive genes known to be prevalent (…) in the donor’s ethnic background”’ (Commission Directive 2006; Dondorp et al. 2014, 2). In the US, screening and testing for certain autosomal conditions is recommended by the American Society for Reproductive Medicine (ASRM) regardless of ethnicity for the entire population, including carrier testing for Spinal Muscular Atrophy (Prior 2008 cited in Dondorp et al. 2014, 1355) and Cystic Fibrosis (ACOG 2011). While, the ASRM do not require karyotyping for chromosomal translocations, the French Centre d’Etude et de Conservation des Oeufs et du Sperme Humains and British guidelines of the Association of Biomedical Andrologists (Dondorp et al. 2014) recommend it. In comparison, in Germany and the Netherlands, there is an active recommendation against karyotyping (Dondorp et al. 2014). Finally, some protocols go so far as to recommend against using a donor who tests positive as a carrier for a heterozygous autosomal recessive disorder (requiring two copies of the gene for the disorder to materialize) (Dondorp et al. 2014). This is despite the fact that, as Sara Wienke et al., report, ‘[i]t is estimated that each individual is a carrier of between zero and seven severe childhood recessive conditions with an average of 2.8 found in one study’ (2014, 191). This has led McGowan, Cho, and Sharp to suggest that ‘identification as a carrier [is] the new normal’ (2013, 9).

From this brief summary it is apparent that there is no consensus about testing/ screening protocols for donated gametes. Rather, they reflect a range of views about what constitutes a ‘normal’ or ‘healthy’ gamete. In the United States, where there is a commercial market for gametes, preconception screening and testing of donors is comprehensive. The World Egg Bank for instance, advertises next generation massive sequencing (NGS) which they describe as ‘a powerful new technology that can examine the entire genetic code of a female donor, and predict how her DNA, or genetic code, will interact with the genetic information of the male partner before conception.’ (http://www.theworldeggbank.com/next-generation-testing/). Testing is not limited to genetic analysis, but often includes comprehensive psychological testing alongside analysis of the medical history of the donor’s immediate family (parents, grandparents and siblings) including any familial experience of conditions such as depression, mood swings, anxiety, and more. Though not required by any professional guidelines, a number of US IVF clinics use personality tests when screening potential donors. One clinic, the New York University Fertility Centre, has undertaken a study of its own practices using what they called ‘enhanced genetic and psychological testing,’ and reported excluding 31 percent of potential donors based on genetic and psychological factors. The report states: ‘Enhanced genetic screening with universal testing for Tay-Sachs, Fragile X and karyotype excluded 25 candidates’ (Reh et al. 2010, 2300). However it goes on to say ‘….those excluded for a personal or family medical history had histories suggestive of an unacceptable transmissible genetic trait such as dyslexia, early cardiac disease and aggressive cancers’ (2300). These potential candidates were not identified (and excluded) by genetic testing but based on family histories. Further, exclusions occurred based on what was described as ‘basic psychological screening.’ Reh notes that ‘depression was the most common factor for exclusion and alcoholism was the most common factor identified in family history of psychological disorder’ (2300). But people were also excluded for attention deficit disorder, obsessive-compulsive disorder, family history of schizophrenia, suicide, bipolar disorder and other conditions (2302). Enhanced psychological testing, where even more candidates were excluded for ‘unfavourable behaviour’, followed this including for: dishonesty, non-compliance, immaturity, criminal history, hostility toward staff and refusal to disclose donation to spouse.

The testing and screening practices described above suggest an acceptance of the heritability of not only single gene conditions but of complex psychological conditions and socially undesirable personal characteristics as well as those regarded to be desirable. Daniels and Heidt-Forsythe equate this geneticization with a modern eugenics movement and state:

The belief that idealized (and often nonbiological) human traits are transmitted genetically is one historical characteristic of the eugenics movement and …. [w]e argue that sperm and egg donation practices in the American reproductive industry mirror positive eugenic beliefs in new and more subtle forms. (Daniels and Heidt-Forsythe 2012, 720)

However, if these screening and testing processes are in lock step with an ideology of improvement it is by no means clear, as our research demonstrates below, that the people who access them have a shared understanding of what is ‘better’ or indeed what is ‘normal’.

Diverse normality and normal disability

In The End of Normal, Lennard Davis describes ‘diversity’ as the new normal but as a constrained concept (Davis 2013) under conditions of neoliberalism. As a neoliberal concept, Davis argues, diversity is shaped by a commitment to the self-authorizing individual and ‘implies celebration, choice’(8) and malleability (5). However, disabled bodies are conventionally imagined as ‘fixed’ (6, 7), in need of fixing and an identity that is not chosen (by oneself or others) (11, 14). Thus, for Davis, the neo-liberal diverse subject, cannot incorporate disability. This caveat is an important corrective to an uncritical embrace of the concept of diversity among those who might otherwise see it as a means to achieve radical inclusion. Davis states ‘the concept of diversity, currently is rendered operative largely by excluding groups that might be thought of as abject or hypermarginalised’ (4). Disability, therefore, ‘reveals the state of exception’ in the neoliberal diversity paradigm, ‘by being continuously connected with the exception to the norm.’(9). Thus, Davis’ contention is that the very difference of disability – its abjectness, immutability and unchoseness – is the necessary category of the not normal against which a self-chosen and malleable diversity can be inscribed as normative (14).

We suggest, and our research demonstrates below, that within the context of ART, where a neoliberal consumerist model increasingly proliferates, diversity nevertheless has a more expansive meaning than that suggested by Davis. We have found that some users of ART re/construct disability within a more capacious and diverse understanding of normalcy – what we might call diverse normality. Indeed, for some users of ART, a neo-liberal construction of diversity is neither accepted nor desired.

The idea that disability can be reg...

Table of contents

• Cover
• Half Title
• Title
• Copyright
• Contents
• Citation Information
• Notes on Contributors
• Introduction – Normality and disability: intersections among norms, law, and culture
• 1. Fit or fitting in: deciding against normal when reproducing the future
• 2. Eccentricity: the case for undermining legal categories of disability and normalcy
• 3. Eugenics and the normal body: the role of visual images and intelligence testing in framing the treatment of people with disabilities in the early twentieth century
• 4. The construction of access: the eugenic precedent of the Americans with Disabilities Act
• 5. Disability and torture: exception, epistemology and ‘black sites’
• 6. Mental capacity and states of exception: revisiting disability law with Giorgio Agamben
• 7. Not just language: an analysis of discursive constructions of disability in sentencing remarks
• 8. Policing normalcy: sexual violence against women offenders with disability
• 9. ‘The government is the cause of the disease and we are stuck with the symptoms’: deinstitutionalisation, mental health advocacy and police shootings in 1990s Victoria
• 10. Disruptive, dangerous and disturbing: the ‘challenge’ of behaviour in the construction of normalcy and vulnerability
• 11. Making the abject: problem-solving courts, addiction, mental illness and impairment
• 12. Cripwashing: the abortion debates at the crossroads of gender and disability in the Spanish media
• 13. ‘Figurehead’ hate crime cases: developing a framework for understanding and exposing the ‘problem’ with ‘disability’
• Index