Preventing the selection of “deaf embryos” under the Human Fertilisation and Embryology Act 2008 : problematizing disability?

Section 14(4) of the Human Fertilisation and Embryology Act 2008 imposes – within the general licensing conditions listed in the Human Fertilisation and Embryology Act 1990 – a prohibition to prevent the selection and implantation of embryos for the purpose of creating a child who will be born with a “serious disability.” This article offers a perspective that demonstrates the problematic nature of the consultation, review, and legislative reform process surrounding s 14(4). The term “serious disability” is not defined within the legislation, but we highlight the fact that s 14(4) was passed with the case of selecting deaf children in mind. We consider some of the literature on the topic of disability and deafness, which, we think, casts some doubt on the view that deafness is a “serious disability.” The main position we advance is that the lack of serious engagement with alternative viewpoints during the legislative process was unsatisfactory. We argue that the contested nature of deafness necessitates a more robust consultation process and a clearer explanation and defence of the normative position that underpins s 14(4).

Genotypes of the MTHFR C677T and MTRR A66G genes act independently to reduce migraine disability in response to vitamin supplementation

BACKGROUND: Migraine is a chronic disabling neurovascular condition that may in part be caused by endothelial and cerebrovascular disruption induced by hyperhomocysteinaemia. We have previously provided evidence indicating that reduction of homocysteine by vitamin supplementation can reduce the occurrence of migraine in women. The current study examined the genotypic effects of methylenetetrahydrofolate reductase (MTHFR) and methionine synthase reductase (MTRR) gene variants on the occurrence of migraine in response to vitamin supplementation. METHODS: This was a 6-month randomized, double-blinded placebo-controlled trial of daily vitamin B supplementation (B(6), B(9) and B(12)) on reduction of homocysteine and of the occurrence of migraine in 206 female patients diagnosed with migraine with aura. RESULTS: Vitamin supplementation significantly reduced homocysteine levels (P<0.001), severity of headache in migraine (P=0.017) and high migraine disability (P=0.022) in migraineurs compared with the placebo effect (P>0.1). When the vitamin-treated group was stratified by genotype, the C allele carriers of the MTHFR C677T variant showed a higher reduction in homocysteine levels (P<0.001), severity of pain in migraine (P=0.01) and percentage of high migraine disability (P=0.009) compared with those with the TT genotypes. Similarly, the A allele carriers of the MTRR A66G variants showed a higher level of reduction in homocysteine levels (P<0.001), severity of pain in migraine (P=0.002) and percentage of high migraine disability (P=0.006) compared with those with the GG genotypes. Genotypic analysis for both genes combined indicated that the treatment effect modification of the MTRR variant was independent of the MTHFR variant. CONCLUSION: This provided further evidence that vitamin supplementation is effective in reducing migraine and also that both MTHFR and MTRR gene variants are acting independently to influence treatment response in female migraineurs.

Duplicity/complicity : misperforming the social drama of disability

In this paper, I investigate the (mis)performance of ‘passing’ in the context of bodies with disabilities. The desire to conceal, control or contain a body’s idiosyncrasies can be a deceitful act, complicit with dominant cultural assumptions about the benefits of fitting in. Passing, and the performative tricks, techniques and prostheses that support the ‘lie’ of passing, upholding a social contract in which a closeting-as-cure approach accommodates discomfort with difference. In this paper, I consider moments of non-passing, where people are caught out by mistakes or deliberate misperformances of the daily social drama of ability and disability. I reference the work of disabled artists Bill Shannon, Aaron Williamson and Katherine Araniello, who re-perform their daily personal interactions in the public sphere as a sort of guerilla theatre. Their work brings hidden assumptions about how disabled people should act and interact to the brink of visibility. It challenges passers-by to confront their complicity in these discourses by pressing them to re-perform their own spontaneous reactions to bodies that misperform the ‘lie’ of normalcy.

“That you would post such a thing implies that you are a despicable human being”: spectatorship, social media, & the struggle for meaning in disability performance

Artists with disabilities working in Live Art paradigms often present performances which replay the social attitudes they are subject to in daily life as guerilla theatre in public spaces – including online spaces. In doing so, these artists draw spectators’ attention to the way their responses to disabled people contribute to the social construction of disability. They provide different theatrical, architectural or technological devices to encourage spectators to articulate their response to themselves and others. But – the use of exaggeration, comedy and confrontation in these practices notwithstanding – their blurry boundaries mean some spectators experience confusion as to whether they are responding to real life or a representation of it. This results in conflicted responses which reveal as much about the politics of disability as the performances themselves. In this paper, I examine how these conflicted responses play out in online forums. I discuss diverse examples, from blog comments on Liz Crow’s Resistance on the Plinth on YouTube, to Aaron Williamson and Katherine Araneillo’s Disabled Avant-Garde clips on YouTube, to Ju Gosling’s Letter Writing Project on her website, to segments of UK Channel 4’s mock reality show Cast Offs on YouTube. I demonstrate how online forums become a place not just for recording memories of an original performance (which posters may not have seen), but for a new performance, which goes well beyond re-membering/remediating the original. I identify trends in the way experience, memory and meaningmaking play out in these performative forums – moving from clarification of the original act’s parameters, to claims of disgust, insult or offense, to counter-claims confirming the comic or political efficacy of the act, often linked disclosure of personal memory or experience of disability. I examine the way these encounters at the interstices of live and/or online performance, memory, technology and public/private history negotiate ideas about disability, and what they tell us about the ethics and efficacy of the specific modes of performance and spectatorship these artists with disabilities are invoking.

Disability and the labour market : an analysis of British males

This paper attempts, using data from the British Labour Force Survey 1996, to examine to what extent differences in labour market outcomes between able-bodied and disabled men may be attributed to differences in endowments of human capital and associated productivity differences. Both labour force participation and selectivity corrected human capital equations are estimated and decomposition techniques applied to them. Using the methodology of Baldwin and Johnson [Baldwin, M., Johnson, W.G., 1994. Labor market discrimination against men with disabilities. Journal of Human Resources, XXIX(1), Winter, 1–19], the employment effects of wage discrimination against the disabled are also estimated. Evidence of both substantial wage and participation rate differences between able-bodied and disabled men are found, which have implications for the operation of the 1995 Disability Discrimination Act.

Educational accountability tests, social and legal inclusion approaches to discrimination for students with disability : a national case study from Australia

The UN Convention on the Rights of Persons with Disability (CRPD) promotes equal and full participation by children in education. Equity of educational access for all students, including students with disability, free from discrimination, is the first stated national goal of Australian education (MCEETYA 2008). Australian federal disability discrimination law, the Disability Discrimination Act 1992 (DDA), follows the Convention, with the federal Disability Standards for Education 2005 (DSE) enacting specific requirements for education. This article discusses equity of processes for inclusion of students with disability in Australian educational accountability testing, including international tests in which many countries participate. The conclusion drawn is that equitable inclusion of students with disability in current Australian educational accountability testing in not occurring from a social perspective and is not in principle compliant with law. However, given the reluctance of courts to intervene in education matters and the uncertainty of an outcome in any court consideration, the discussion shows that equitable inclusion in accountability systems is available through policy change rather than expensive, and possibly unsuccessful, legal challenges.

The National Disability Insurance Scheme Handbook

"The National Disability Insurance Scheme (NDIS) was launched on 1 July 2013. The NDIS Act 2013 is an historic piece of legislation that is the foundation for a national scheme which will deliver meaningful change for people with disabilities across Australia. The NDIS seeks to support the independence and social and economic participation of people with a disability, mainly by funding the provision of reasonable and necessary supports, including early intervention supports. The NDIS establishes three main criteria for access to the scheme - age, residence and disability. The National Disability Insurance Scheme Handbook written by Bill Madden, Janine McIlwraith and Ruanne Brell examines the NDIS from the viewpoint of a person seeking to access the NDIS and those advising or assisting them. The three key criteria are examined, along with the powers of the NDIS Chief Executive Officer and the scope for review of adverse decisions. The important area of interplay between the NDIS and compensation entitlements is carefully scrutinised. This handbook provides scheme users, carers, lawyers and health practitioners with an easy to understand guide to this watershed legal development."--Publisher website

Disability, public space performance & spectatorship : Unconscious performers

Why would disabled people want to re-engage, re-enact and re-envisage the everyday encounters in public spaces and places that cast them as ugly, strange, stare-worthy? In Disability, Public Space Performance and Spectatorship: Unconscious Performers, Bree Hadley examines the performance practices of disabled artists in the US, UK, Europe and Australasia who do exactly this. Operating in a live or performance art paradigm, artists like James Cunningham (Australia), Noemi Lakmaier (UK/Austria), Alison Jones (UK), Aaron Williamson (UK), Katherine Araniello (UK), Bill Shannon (US), Back to Back Theatre (Australia), Rita Marcalo (UK), Liz Crow (UK) and Mat Fraser (UK) all use installation and public space performance practices to re-stage their disabled identities in risky, guerilla-style works that remind passersby of their own complicity in the daily social drama of disability. In doing so, they draw spectators' attention to their own role in constructing Western concepts of disability. This book investigates the way each of us can become unconscious performers in a daily social drama that positions disability people as figures of tragedy, stigma or pity, and the aesthetics, politics and ethics of performance practices that intervene very directly in this drama. It constructs a framework for understanding the way spectators are positioned in these practices, and how they contribute to public sphere debates about disability today.

Feminist Disability Theory: Domestic Violence Against Women with a Disability

Women with a disability continue to experience social oppression and domestic violence as a consequence of gender and disability dimensions. Current explanations of domestic violence and disability inadequately explain several features that lead women who have a disability to experience violent situations. This article incorporates both disability and material feminist theory as an alternative explanation to the dominant approaches (psychological and sociological traditions) of conceptualising domestic violence. This paper is informed by a study which was concerned with examining the nature and perceptions of violence against women with a physical impairment. The emerging analytical framework integrating material feminist interpretations and disability theory provided a basis for exploring gender and disability dimensions. Insight was also provided by the women who identified as having a disability in the study and who explained domestic violence in terms of a gendered and disabling experience. The article argues that material feminist interpretations and disability theory, with their emphasis on gender relations, disablism and poverty, should be used as an alternative tool for exploring the nature and consequences of violence against women with a disability.