Zeitschriftenartikel zum Thema „Partnership and parenthood of people with mental disabilities“

Sexuality represents one of the basic dimensions of human existence, which is channelled through sexual and gender identification and role, sexual orientation, eroticism, emotional commitment, satisfaction, and reproduction. Sexuality is also linked to many significant health problems, especially in the area of reproductive and sexual health. Sexual health is the condition of physical, emotional, mental, and social wellbeing that is linked with sexuality. Knowledge about sexual health, contraception and selection of contraceptives, and the risk of sexually transmittable diseases is not only relevant for individuals? sexuality; it?s also important for encouraging the use of health services and other forms of support that are necessary to protect youth from sexually transmittable diseases and the maintenance of sexual and re-productive health. When it comes to sexuality and care of reproductive and sexual health, some groups are especially vulnerable. Bearing in mind the specific conditions women with disabilities grow up in and their dependence on assistance and support from other people, satisfying their needs for partnership, sexuality, and parenthood becomes unattainable for many, or it takes place under the control of professionals or family members. In this context, people with visual impairments are part of a vulnerable group, acknowledging that visual impairment leads to limitations in everyday life, autonomy, and quality of life to its full potential. The purpose of this article is to describe the phenomena of sexuality and sexual health among people with visual impairments, and to point out the existing international and national normative frameworks relevant to the sexual health of people with disabilities. Existing legislative acts acknowledge the right to a normal sexual life, as well as to the care and maintenance of the sexual health of people with disabilities. However, there are many obstacles and limitations that hamper the practical application of these rights: health issues, communication problems, lack of privacy, people?s acceptance of the inhibition of their own sexuality, or their acceptance of the labelling and normalisation of their situation. Even considering the existence of the regulation, the system of support for maintaining and improving the sexual and reproductive health of women with disabilities is not developed enough. The lack of literature relating to this topic shows that its importance is not recognised enough among the relevant actors, including organisations that advocate for people with disabilities. Realising the existing general legal framework requires the will of policymakers, who could enact and implement specific bylaw regulations, as well as activating the societal actors relevant to this field.

Purpose – The purpose of this paper is to serve as a commentary on the work reported by Hilary Johnson and her colleagues, which used partnership working as a lever for developing community inclusion for people with complex communication needs. Design/methodology/approach – The commentary uses the wider literature on social inclusion as well as narrative from current policy in England on the development of “Transforming Care Partnerships” to explore some of the issues raised by the research. Findings – The conclusion is that physical integration is only the starting point for a vision where people with the most complex needs live the “included life” which evolves by developing partnership working and reciprocal relationships between people with and without disabilities. Originality/value – This paper attempts to highlight relevant key research in the area of social integration as a way of reviewing the likely impact of recent policy on the lives of people with intellectual disabilities and the most complex needs.

Purpose The purpose of this paper is to outline a two-year project designed to reduce health inequalities and improve health outcomes of people with intellectual disabilities using health services in South London by raising awareness and increasing health staff confidence and capability. Design/methodology/approach The project was conducted in two stages. In stage 1, a mapping exercise was undertaken to establish existing intellectual disabilities education and training availability. In stage 2, a network of stakeholders was formed and education and training materials were developed and delivered. Findings A formal evaluation of the project is underway and this paper seeks to share information about the project. That said prima facie data appear to indicate that health staff who attended education and training events learned new knowledge and skills that they could implement in their practice, increasing confidence and capability. Research limitations/implications Health staff who attended the events appeared to have an interest in intellectual disabilities and wanted to increase their knowledge and skills base. This means that there is a significant group of health staff that the project was unable to reach or who may not know that they need to know about intellectual disabilities. The results of the project have not yet been formally analysed. Practical implications Work-based education and training events can have a positive impact on health staff capability and confidence, however, it would appear that only those who already have an interest in the field or recognise its value to their own practice attend such events. To truly capture all health staff intellectual disabilities needs to be visibly included in all health curricula. Originality/value This project has not focussed on one profession or one aspect of healthcare and has embraced the values of inter professional and inter agency learning; this has enabled health staff to learn from each other and think in a “joined up” way replicating the realities of providing healthcare to people with intellectual disabilities.

AbstractThis paper explores the role of friendship in the lives of people with psychiatric disabilities through the use of narrative. We suggest that the use of phenomenologically based investigation in experimental or other traditional research designs provides a more in-depth and complex view of the lives of people with serious mental illness. We offer the example of the Partnership Project, which provides people with psychiatric disabilities a consumer or non-consumer "partner" with whom to enjoy community activities and spend a weekly stipend. Through the lens of narrative, we examine the ways that friendship differs between people matched with either a consumer or non-consumer partner and delve into the importance of connection and friendship in the lives of people with psychiatric disabilities.

Purpose – The purpose of this paper is to present information from the Joint Health and Social Care Self-Assessment Framework (JHSCSAF) on reported rates of cervical cancer, breast cancer and bowel cancer screening for eligible people with learning disabilities in England in 2012/2013 compared to screening rates for the general population. Design/methodology/approach – Between 94 and 101 Learning Disability Partnership Boards, as part of the JHSCSAF, provided information to allow the calculation of rates of cervical cancer, breast cancer and bowel cancer screening in their locality, for eligible people with learning disabilities and for the population as a whole. Findings – At a national level, reported cancer screening coverage for eligible people with learning disabilities was substantially lower than for the population as a whole (cervical cancer screening 27.6 per cent of people with learning disabilities vs 70 per cent of total population; breast cancer screening 36.8 per cent of people with learning disabilities vs 57.8 per cent of total population; bowel cancer screening 28.1 per cent of people with learning disabilities vs 40.5 per cent of the general population). There were considerable geographical variations in reported coverage for all three screening programmes. Originality/value – Consistent with previous research, localities in England report cancer screening rates for eligible people with learning disabilities considerably below those of the general population. There is an urgent need to address data availability and quality issues, as well as reasonable adjustments to cancer screening programmes to ensure uniformly high rates of cancer screening for people with learning disabilities across England.

This project, conducted during 2010 by a researcher working with a self-advocacy group, investigated the implementation of Annual Health Checks (AHCs) for people with intellectual disabilities in Oxfordshire, where only 26.1 percent of AHCs were completed in 2009–10 (national average 41 percent). AHCs were introduced in England in 2008 as a response to findings that people with intellectual disabilities have significantly worse health care than other groups. GP practices are financially incentivized to offer AHCs. This study found that slow progress in implementing AHCs was attributable to: uncertainty over who was eligible; limited awareness in general practices about the legal duty to make ‘reasonable adjustments’ to facilitate access; limited awareness of AHCs and their potential benefits amongst carers and adults with intellectual disabilities; and in some cases scepticism that AHCs were either necessary or beneficial. The article also explores the benefits of undertaking this project in partnership with a self-advocacy group.

SUMMARYClear policies regarding sexual expression, sexual behaviour and related decision-making assist in ensuring that the rights of people with mental disorder or intellectual disability are upheld, and that staff know how to react to situations consistently and lawfully without interfering on the basis of their own moral judgements or personal beliefs. Sensitive and holistic planning of care that complies with domestic law, international human rights law and statutory guidance is necessary to complement such policies. Non-intimate physical contact, masturbation, sexual relationships, contraception, sterilisation and vasectomy, pregnancy, termination of pregnancy, sexual dysfunction, parenthood, marriage and civil partnership, divorce, prostitution, pornography, and sex aids and toys are all matters that may properly be part of care planning.LEARNING OBJECTIVES•Understand the limited legal basis for the formulation of policies and rules concerning sexual expression, sexual behaviour and related decision-making by people with mental disorder or intellectual disability•Be able to formulate policies concerning sexual matters as they relate to people with mental disorder or intellectual disability•Be able to plan care for psychiatric patients and community service users balancing their rights to sexual fulfilment with the protection of their own welfare and the protection of othersDECLARATION OF INTERESTNone.

This study aimed to investigate the experiences of people with intellectual disability (ID) using information and communication technologies (ICTs) and the ways these technologies foster social connectedness. In partnership with a community mental health organization, this qualitative descriptive study explored the experiences of 10 people with ID using ICTs. Participants described how ICTs Opened the Door to Possibilities in their life – ICTs provided an avenue for connecting with other people, a means to pursue personal interests and a tool for organizing everyday life. Opening the door to possibilities was further understood as movement towards digital inclusion for people with ID, conceptualized as the fit between social opportunity and personal skills. We have identified the prominent role social supports play in creating (and constraining) opportunities for digital inclusion, and that digital inclusion has the potential to enable social connectedness and the development of agency. Consideration of the complex interaction between social opportunity and personal skills, and the mediating influence of supports, will enhance the inclusion of people with ID.

Opportunities for persons with intellectual disabilities to participate in relationships and sexuality education (RSE) are often constrained by the attitudes and perceptions of family carers, frontline support workers and professional staff. In order to understand how the barriers might be reduced, a study was undertaken in Northern Ireland with samples drawn from these three stakeholder groups, involving nearly 100 persons and using group and individual interviews. Although there was agreement on the need for RSE, four barriers were commonly reported: the need to protect vulnerable persons; the lack of training; the scarcity of educational resources; and cultural prohibitions. The impact of these barriers could be lessened through partnership working across these groups involving the provision of training and information about RSE, the development of risk management procedures and the empowerment of people with intellectual disabilities.

Purpose The over-reliance on psychotropic medication for the management of patients with learning disabilities with behaviour that challenges is well documented.This paper aims to discuss the application of the methodology of clinical audit within community learning disability mental health services to adapt interventions including optimising prescribing practice and behavioural interventions aiming to reduce behaviour that challenges in people with learning disabilities. Design/methodology/approach Questionnaire-based review of documentation in electronic patient records, covering relevant audit standards in line with NICE and Royal College of Psychiatrists, was carried out in the North Essex Community Learning Disability Service, Hertfordshire Partnership NHS Foundation Trust. The audit included patients on the caseload of consultant psychiatrists. Findings The audit demonstrated that the prescribing of psychotropic medication was within BNF maximum limits for all patients, evidence of “consent” procedures was being followed in the majority, and there was some evidence of deprescribing attempts.Improvement was required in several areas e.g. undocumented off label prescribing in a significant proportion of patients. Objective measures to record the severity of behaviours and the effects of the medication were being used by clinicians in only a small proportion of patients. A significant proportion of patients have prescribed medication in the absence of appropriate psychological or environmental interventions. Originality/value As a result of the audit findings, the action plan made recommendations such as the development of a database for tracking the prescribing of psychotropic medicines and routine use of standardised measures. This action has been supported by the pharmacy team. Positive developments include a clinical psychologist taking on the role of leading the development of behavioural intervention strategies.

Community-based rehabilitation is the strategy endorsed by the World Health Organization and other international bodies to promote the inclusion of people with disabilities, particularly in low- and middle-income countries. In this article we trace the journey of Edawu, a mental health rehabilitation unit in a rural area of Benue State, Nigeria, from an in-patient rehabilitation unit to a community-focused service. The partnership of organisations from the UK with Edawu along the journey is also described. The authors set out learning points from the project and the principles behind sustainable overseas organisational partnerships.

AbstractObjectives: The demand for places in supported accommodation is likely to rise due to the increasing longevity of people with intellectual disabilities and as their parents become unavailable or unable to care for them. However few attempts have been made to ascertain carer's views on alternative accommodation.Method: Four studies were undertaken in Northern Ireland to ascertain carer's views using three different methods. In all, 387 carers participated with the response being greatest for individual interviews conducted in the family home and least for self-completed questionnaires and attendance at group meetings.Results: The majority of carers envisaged the person continuing to be cared for within the family. The most commonly chosen out-of-home provision was in residential or nursing homes, living with support in a house of their own and in homes for small groups of people. Few carers chose living with another family. However only small numbers of carers envisaged alternative provision being needed in the next two years and few had made any plans for alternative living arrangements.Conclusions: The implications for service planning are noted, primarily the need for individual reviews of future needs through person-centred planning; improved information to carers about various residential options and their differential benefits, along with more services aimed at improving the quality of life of people living with family carers. These need to be underpinned by a commitment of statutory agencies to partnership working with family carers. The implications for mental health services are noted.

In the education of social workers, it is particularly important to seek working methods that provide to experience values which define the foundations of professional action. The authors of the article approve the personalistic philosophy as a theoretical basis of educational work, the practice of which is based on the cooperation of academic staff and students, striving for partnership, open dialogue and experiencing personal subjectivity. Nevertheless, the essence of the issue is to search for the content of education, which refers not only to contemporary social issues, but also to their historical conditions and correlates. The context for the article is a reflection on the history of 20th century eugenics, with particular emphasis on the extermination of nearly a quarter of a million people with mental illness and disabilities performed by the German Nazi. It is difficult, without studying the times in which the history derailed, to fully understand the social responsibility of people who are particularly vulnerable and exposed to social non-recognition and damage. The curriculum of social workers’ education at the Institute of Sociology of the Jagiellonian University in Krakow has included the space of the Clinical Hospital in Krakow's Kobierzyn, where, in cooperation with the Institute of Therapy and Social Education - the Association, an educational project under the name of Axiological Walk in Kobierzyn is being implemented. The article is based on reflection on axiological education in the light of evaluation of the aforementioned project.

The international community has committed to end the tuberculosis (TB) epidemic by 2030. To facilitate the meeting of the global incidence and mortality indicators set by the World Health Organization's End TB Strategy, the Stop TB Partnership launched the three 90-(90)-90 diagnostic and treatment targets in 2014. In this paper, we argue that a ‘fourth 90’—Ensuring that 90% of all people successfully completing treatment for TB can have a good health-related quality of life'—should be considered. Many individuals who successfully complete anti-TB treatment are burdened with lifelong comorbidities—human immunodeficiency virus (HIV) and diabetes mellitus, obstructive and restrictive lung disease, involving lung destruction, cavitation, fibrosis and bronchiectasis, that either pre-existed or developed as a result of TB (e.g., chronic pulmonary aspergillosis), permanent disabilities such as hearing loss resulting from second-line anti-TB drugs, and mental health disorders. These need to be identified during TB treatment and appropriate care and support provided after anti-TB treatment is successfully completed. A ‘fourth 90’ has also been proposed for the UNAIDS 90-90-90 targets similar in scope to what is being suggested here for TB. Adoption by both HIV and TB control programmes would highlight the current focus on integrated person- and family-centred services.

BackgroundSri Lanka's 28 year protracted civil conflict between the government forces and Liberation Tigers of Tamil Eelam (LTTE) in the North of country saw dramatic end by May 2009 when the military forces succeeded in crushing the LTTE. Around 300,000 people were displaced due to the conflict and they were settled in welfare villages established in the North.DiscussionThe Government of Sri Lanka working in partnership with all other actors mounted a major humanitarian response to address the needs of the war displaced population. The Ministry of Health took a leading role in coordinating the health care programs for the Internally Displaced Population(IDP).ObservationsHigher morbidity and mortality observed during early phase of settlement of IDPs was due to the results of two scenarios, one being the conflict situation and its direct consequences that have caused injuries, disabilities and mental trauma among the population. The second being the result of the collapse of the health system in conflict affected areas, long period of displacement of people and the disruption of social structures that have led to the indirect consequences of increase of infectious diseases and worsening of chronic diseases. Ministry of Health used Daily Crude Mortality Rate (DCMR) to measure the success of the response. According to the Sphere Project guidelines that developed a set of minimum standards in a disaster situation, the DCMR should be 0.25 per 10 000 population for South East Asia. The emergency threshold level is 0.5 per 10 000 per day for this region.ConclusionsOf the number of people reaching the IDP welfare villages in early stages of emergency phase in May, DCMR averaged to 0.7. The figure settled to less than 0.5 per 10000 in June 2009. Thereafter daily DCMR remained less than 0.5 indicating success of the provision of care for IDPS.

Abstract The Florida Department of Elder Affairs (DOEA) provides programs and services for over 65,300 older people and adults with disabilities. These individuals are uniquely vulnerable and may be displaced, and/or disoriented during natural disasters. DOEA clients are dependent upon community-based services to provide supervision or assistance to perform basic self-care, which often makes sheltering in place alone a danger to their health and well-being. During Hurricane Michael (2018) many older adults who previously were independent sought help for many issues including property damage, utility interruption, food and medicine scarcity, and physical or mental health problems associated with the storm and its aftermath. In normal conditions, DOEA identifies older populations via Census tracts and then conducts outreach events to inform the public how to access social services. However, after the widespread displacement post-storm, traditional outreach approaches were insufficient. A method was needed to remove areas that were rendered uninhabitable and find who remained in place. DOEA identified viable neighborhoods by overlaying property damage locations on base layers of Census tracts with concentrations of older adults and polling places with high percentage of age 60+ voter participation in the subsequent November election. Then in partnership with Feeding Florida, we provided information and registration assistance via local food distribution sites in those areas. This methodology of overlaying Division of Emergency Management property damage records and voter participation records against publicly available Census tract files is a strategy that could be replicated by other disaster and flood-prone communities or organizations that have similar needs.

Objectives: As advancing evidence on modifiable resources to support mental health in persons experiencing physical disabilities is of particular importance, we investigate whether structural and functional social relationships relate to mental health in people with spinal cord injury (SCI).Methods: Data from 12,330 participants of the International SCI community survey (InSCI) from 22 countries were analyzed. Structural (partnership status, living situation) and functional aspects of social relationships (belongingness, relationship satisfaction, problems with social interactions) were regressed on the SF-36 mental health index (MHI-5), stratified by countries and for the total sample using multilevel models.Results: Functional aspects of social relationships were consistently related to clinically relevant higher MHI-5 scores and lower risk of mental health disorders (MHI-5 >56). Structural social relationships were inconsistently associated with mental health in our sample.Conclusion: This study provides evidence that functional aspects of social relationships are important resources for mental health. Interventions to establish and maintain high quality relationships should be considered in public health interventions and rehabilitation programs to reduce long-term mental health problems in persons experiencing physical disabilities.

Abstract Objectives People with intellectual disabilities are living longer, and many require palliative care. There is a lack of evidence regarding information needs which may exist for their family caregivers. This study aimed to determine the informational needs of family caregivers of people with intellectual disabilities who require palliative care. Methods A qualitative, exploratory design was underpinned by the Transactional Model of Stress and Coping and the Transformative Paradigm. The study involved five Health and Social Care (HSC) Trusts and two Hospices in one region of the United Kingdom. Family caregivers (n = 10) participated in individual interviews. HSC professionals’ (n = 28) perceptions of informational needs were explored within focus groups (n = 6). Results Family caregivers reported information needs chiefly concerning the disease, financial entitlements, and practical support which could change over the disease trajectory. Findings evidence the expertise of long-term family caregivers, prior to the end of life. Palliative care and intellectual disability teams acknowledged their role to work in partnership and facilitate access to information. Recommendations were mapped onto a co-designed logic model. Significance of results New insights into the specific informational needs of this family caregiving population. A co-designed logic model presents these needs and how they may be addressed. Central co-ordinators have been advocated for these caregivers. This model could have international applicability for similar family carers, supporting people with other disabilities or cognitive impairment, and should be further explored.

Mental illness is a major public health concern in Canada and also globally. According to the World Health Organization, five of the top ten disabilities worldwide are mental health disorders. Within Canada, one in five individuals is living with mental illness each year. Currently, there are 6.7 million Canadians living with mental illness and over 1 million Canadian youth living with mental illness. Police are frequently the first responders to situations in the community involving people with mental illness, and police services are increasingly aware of the need to provide officers with additional training and strategies for effectively interacting with these citizens.This study examined the effectiveness of four online, interactive video-based simulations designed to educate police officers about mental illness and strategies for interacting with people with mental illness. The simulations were created through the efforts of a unique partnership involving a police service, a mental health facility and two postsecondary institutions. Frontline police officers from Ontario were divided into one of three groups (simulation, face to face, control). Using a pre- and post-test questionnaire, the groups were compared on their level of knowledge and understanding of mental illness. In addition, focus groups explored the impact of the simulations on officers’ level of confidence in engaging with individuals with mental illness and officers’ perceptions of the simulations’ ease of use and level of realism. The study’s findings determined that the simulations were just as effective as face-to-face learning, and the officers reported the simulations were easy to use and reflected real-life scenarios they had encountered on the job. As mental health continues to be a major public concern, not only in Canada but also globally, interactive simulations may provide an effective and affordable education resource not only for police officers but for other professionals seeking increased knowledge and skills in interacting with citizens with mental illness.Keywords: policing, mental illness, education, computer-based simulation

Mindfulness and compassion meditation are thought to cultivate prosocial behavior. However, the lack of diverse representation within both scientific and participant populations in contemplative neuroscience may limit generalizability and translation of prior findings. To address these issues, we propose a research framework called Intersectional Neuroscience which adapts research procedures to be more inclusive of under-represented groups. Intersectional Neuroscience builds inclusive processes into research design using two main approaches: 1) community engagement with diverse participants, and 2) individualized multivariate neuroscience methods to accommodate neural diversity. We tested the feasibility of this framework in partnership with a diverse U.S. meditation center (East Bay Meditation Center, Oakland, CA). Using focus group and community feedback, we adapted functional magnetic resonance imaging (fMRI) screening and recruitment procedures to be inclusive of participants from various under-represented groups, including racial and ethnic minorities, gender and sexual minorities, people with disabilities, neuropsychiatric disorders, and/or lower income. Using person-centered screening and study materials, we recruited and scanned 15 diverse meditators (80% racial/ethnic minorities, 53% gender and sexual minorities). The participants completed the EMBODY task – which applies individualized machine learning algorithms to fMRI data – to identify mental states during breath-focused meditation, a basic skill that stabilizes attention to support interoception and compassion. All 15 meditators’ unique brain patterns were recognized by machine learning algorithms significantly above chance levels. These individualized brain patterns were used to decode the internal focus of attention throughout a 10-min breath-focused meditation period, specific to each meditator. These data were used to compile individual-level attention profiles during meditation, such as the percentage time attending to the breath, mind wandering, or engaging in self-referential processing. This study provides feasibility of employing an intersectional neuroscience approach to include diverse participants and develop individualized neural metrics of meditation practice. Through inclusion of more under-represented groups while developing reciprocal partnerships, intersectional neuroscience turns the research process into an embodied form of social action.

Introduction Feline Hitler look-alikes. Dogs attired in hats and bow-ties. Rabbits wearing lace bonnets. Images of these animals abound on the Internet with a host of websites paying homage to their cuteness. Emphasising the cuteness of non-human animals by anthropomorphising them is a common trend online, but there is also another side to the human relationship with other animals that has created a different category of cuteness. The blogger, Tiffiny Carlson, remarks that there has been an “onslaught of virtual love for disabled animals” who are not dressed to look like humans or imagined as human look-alikes to signify as cute. Rather, an animal’s disability becomes the signifier for cuteness. Carlson defines this as “cute-ifying disability” wherein disability is what makes an animal cute. In this context, a dog with an artificial leg, a gold-fish with a “wheelchair”, and a cat with visible breathing difficulties register as cute precisely because of their disabilities. In this paper, I draw on Carlson’s idea of “cute-ifying” disability to analyse the popularity of the cat, Lil Bub (https://www.facebook.com/iamlilbub). In doing so, I name non-human animals as animals and human-animals as humans. This is not to state that humans are not animals, but rather to use these terms to make visible the hierarchical relationship developed between them. (Re)defining Disability and Cuteness Critical disability studies aims to challenge and unpack the norms through which disability is dominantly represented, understood and politicised in terms of a “lack”. In keeping with this intention, Tanya Titchkosky argues that perceptions about disability need to move away from defining disability as an object of knowledge. Instead, Titchkosky advocates for an experience that conceives of disability as a “space of interpretive encounter” (56) that enables a “way of perceiving and orienting toward the world” (4). Here, Titchkosky discusses disability in terms of the norms through which disability is treated, thus intimating that “disability” and “ability” are socio-cultural constructs that establish the norms through which human capacity and capability (mental, physical and emotional) are understood. In line with this observation, this section intends to analyse the norms through which disability is formed, and in turn, how these norms inform human-animal relations and their impact on “cuteness”. One of the fundamental norms that undergirds understandings of disability is the idea that disability is inferior to “ability”, so much so that the philosopher, Paul W. Taylor suggests that human illness and disablement equates to an animal’s existence, regardless if they are disabled or not. He specifies, “We [humans] have a sense of gratitude at the good fortune that we were not born one of them [animals], a sense that comes sharply into focus when, through some abnormality of birth or by some accident or disease a human being is reduced to leading an animal’s simple kind of life…In comparison with the severely restricted kind of existence that is the lot of plants and animals, our own human modes of life are naturally appreciated for being so much richer, fuller, more interesting and desirable in every way” (158). Taylor asserts that disability becomes equated to animality through defining both as simpler examples of existence. Animals are therefore recognised in a similar way to disabled humans, wherein both are rendered as reduced facsimiles of “interesting” and “desirable” human existence. Other scholars of critical human-animal studies, such as Kari Weil and Cary Wolfe also make a connection between animality and disability, but do so in such a way that challenges normative assumptions about both as lacking agency. Kari Weil argues that the normative ways in which the complexity of human expression and consciousness is measured according to linguistic ability is not necessarily correct, rather, it is “an obstacle to a…fullness of vision” (88). Weil claims that this “fullness of vision” is expressed by “beings who are removed from ‘normal’ sociolinguistic behavior. These beings may be nonhuman animals as well as persons with certain linguistic and cognitive disabilities” (88-89). Drawing on the example of Temple Grandin, (who has written about her life with autism and how this has enabled her to form a bond with animals), both Weil and Wolfe state that the idea of animals and disabled humans as “simple” needs re-assessment. Wolfe makes this clear when she cites Grandin’s first book, Emergence: Labeled Autistic, as demonstrating the interior narrative to autistic thought and experience, and therefore enabling an “unthinkable” act “because it had been medical dogma…that there was no ‘inside,’ no inner life, in the autistic…” (111). Wolfe uses this re-conception of the inner life of disability to think through the complexity of animals’ “interior” life. This is not to conflate animals with disabled humans, but instead, to offer a more nuanced understanding of representations of difference. Rosemarie Garland-Thomson analyses how these representations of difference normalise disability as a spectacle. She writes, “the history of disabled people in the Western world is in part the history of being on display, of being visually conspicuous while politically and socially erased” (56). Disability, then, is visibilised as a spectacle to be looked at as “other”, and in this act of looking, disabilities are rendered as irrelevant to “ordinary” normality. Garland- Thomson further indicates that curiosity preoccupies the human eye when gazing on perceived disabilities, wherein the compulsion to “gawk with abandon at the prosthetic hook, the empty sleeve, the scarred flesh…” occurs without seeing (or wanting to see) the whole body “of the person with a disability” (57). In this context, those who gawk fail to see the interior life Wolfe and Weir state is taken away from disability. Instead, disabled people are labelled in terms of their perceived anomalies to a normative social order. Garland-Thomson states that this process of looking at disability is considered “illicit” (2002: 57) and therefore the need to look away accompanies the compulsion to “gawk”. Why is this process of looking illicit? The stories of those who contend with disabilities provide an explanation. For example, the blogger, BigMamaDiva2, writes about how her son’s diagnosis of PDD-NOS (Pervasive Development Disorder-Not Otherwise Specified) was the official label used to identify the series of “symptoms” her son was exhibiting (1). PDD-NOS is under the umbrella of the Autism spectrum of diagnoses. In her blog, BigMamaDiva2 narrates how people perceive her son through a narrow lens defined by the hegemony of normalcy and the assumptions attached to autism. Through this lens, her son is deemed “limited” and “rude”. Part of the reason that he is perceived in this manner is the fact that he looks back and even stares intently at the people who misjudge him. The look of judgement people give him is thrown back in their faces, accounted for, and not dismissed. Even if BigMamaDiva2’s son does not intend to challenge these people, the fact that he does not give them the opportunity to look away, or to look with impunity, creates a sense of discomfort for those who mark out his “disability” and look down on him because of it. This exchange in looking/being looked at contributes to the illicitness in looking at disability because of the discomfort it brings to those who stare and those who are stared at. There is a message that informs this sense of discomfort; it is a message that tells those who are looked at that they are being judged as helpless and inferior. Extending this discomfort is the fact that those who are looked at can look back and stare in response to those who castigate them. This desire to “look away”, as Garland-Thomson puts it, intimates the need to look away before the person being stared at has the chance to look back. In this context, this sense of looking at/looking away attempts to construct a hierarchy wherein the exceptional is pathologized and the “ordinary” is normalised (Garland-Thomson 56). However, when a person views animals, a different kind of gaze can be evoked. This kind of gaze is informed by cuteness and how it frames some animals as human objects of appreciation and adoration. By “cuteness,” I refer to Joshua Dale’s definition of “cute” as: juvenile features that cause an affective reaction, somatic cuteness…namely, large head and small, round body; short extremities; big eyes; small nose and mouth. Whether genetic, or activated by learned signals, the cuteness response is also associated with a range of behavioral aspects, including: childlike, dependent, gentle, intimate, clumsy, and nonthreatening. Such physical and behavioral features trigger an attachment based on the desire to protect and take care of the cute object. (1) The reasons that contribute to the illicitness of looking at human disability are the factors which “cute-fy” animals and disability. It is precisely because of the animals’ supposed “disabled” characteristics of helplessness, inferiority and child-like appeal that package them as cute. In this context, this kind of animal refers to a domesticated pet. If that pet has a disability, this sense of cuteness is enhanced as it emphasises the factors which construct them as cute in the first place. Disability is thus “cute-fied” through asserting signifiers of disability as cute. The following section draws on this process of cute-fying disability to chart the ways in which animals are framed in a human/animal hierarchy that conceptualises disabled animals as commodified spectacles for human consumption. The following section also demonstrates how cute-fying disability also engenders a re-reading of disability in the manner advocated by Titchkosky, Weir, and Wolfe to “see” and contend with disabilities in a more ethical manner. Lil Bub: Commodity, Charity and Companion Lil Bub, a cat which has become a celebrity, is an example of how “cute-ifying” disability occurs online. According to Mike Bridavsky (Lil Bub’s carer/owner), this cat was: discovered as the runt of a healthy feral litter in a tool shed in rural Indiana, she was taken in as a rescue when it was clear that she would require special care. BUB was born with a multitude of genetic anomalies […] She is a “perma-kitten”, which means she will stay kitten sized and maintain kitten-like features her entire life. She also has an extreme case of dwarfism, which means her limbs are disproportionately small relative to the rest of her body and she has some difficulty moving around. She has very short, stubby legs and a weird, long, serpent-like body. Her lower jaw is significantly shorter than her upper jaw, and her teeth never grew in which is why her tongue is always hanging around. (1) As of the 16th of April 2014, Lil Bub’s genetic anomalies have garnered 669,617 likes on the Facebook page dedicated to her. This page has links to an online shop selling merchandise (for example, shirts, calendars, and mugs) highlighting Lil Bub’s genetic anomalies, as well as a YouTube channel which showcases Lil Bub’s disability as cuteness. A documentary about Lil Bub (Lil Bub & Friendz) also won the award for best online feature film at the 2013 Tribeca Film Festival. On both the Facebook page and the YouTube channel, people have written about how cute Lil Bub is. Many use highly emotive language to express how cute they think Lil Bub is, writing that they are “dying” from Lil Bub’s cuteness to how “overwhelmingly sweet” Lil Bub’s face is. These comments are predominantly in response to images of Lil Bub walking and sitting. On the Facebook page, these images are paired with captions written by Lil Bub’s owner and fans of Lil Bub. These captions imagine a context to Lil Bub’s expression of permanent cuteness, which shows her tongue hanging out and eyes that boggle in a look of surprise. For example, the caption “Friday!” is written above a picture of Lil Bub staring at the camera. Another caption, “must be raining yoghurt” is written above a picture of Lil Bub with a similar expression. Images of Lil Bub are predominantly the same, but the captions change to add diversity to what viewers can see on Facebook. Lil Bub also features on the online portal, I Can Has Cheezburger, which has a page dedicated to animals with disabilities (http://icanhas.cheezburger.com/tag/disabled). Carlson questions the popularity of these animals, and more specifically, why animal disabilities are considered as cute. Taking the definition of cute as categorising something/one as infantilised, needing assistance, and simpler than oneself, it can be argued that this definition matches with the views expressed by Taylor, as well as akin to how disability is seen in terms of “normality”. In this context, cuteness can encourage reductive ideas about disability and those who are differently-abled as “simple”. In Lil Bub’s case, several memes are made about her, including one with her usual look of surprise. This meme (http://cheezburger.com/7459833088#comments), which features on I Can Has Cheezburger, notes, “most cats look at you, questioning your intelligence…not this one.” The assumption that Lil Bub is not “condescending” (like other cats are supposed to be) is due to the fact that her tongue is sticking out because she has not grown any teeth. Her disability is framed as non-threatening, less confrontational than other cats, and therefore is a cuter, loveable option. In this context, disability is used to neutralise and make disability a manageable spectacle that can be commented on. Consequently, cuteness makes disability palatable by rearranging how people can consume and grasp the spectacle of disability. As mentioned earlier in this paper, Garland-Thomson writes about the illicitness which surrounds looking at disability. Cute-ifying disability through animals can remove the illicitness that informs the interaction Garland-Thomson describes. The online presence of cute animals, who are “cute” because of their disabilities, invites the human gaze to rest on their disabilities and encourages them to linger, to keep looking without feeling the need to look away. This desire to linger on the cute animal informs the commodification of Lil Bub. For example, the range of products produced to celebrate Lil Bub’s cuteness highlight how viewers are invited to visually absorb everything to do with Lil Bub. Cute-ifying disability, in terms of packaging “cute disabilities” as commodities, re-signifies how humans can perceive and view disability through rearranging the “awkward partnership” between disability and ability. Disability, in this case, can be marketed as “cute” and bought and sold because of its cuteness. However, the marketing of cuteness can also act as an entry point to think through and create awareness about complex social issues. For instance, cuteness can promote awareness about the “right to life” of disabled animals, which is one of Bridavsky’s aims. On a fact sheet written by Bridavsky, the message of celebrating difference is expressed: Beyond being overwhelmingly cute, exceptionally smart and painfully witty, BUB is an advocate for homeless and special needs pets all over the universe. Since before she was a star she has made it a point to spread a message of positivity. She proves that being different is better and she encourages the adoption of pets and helping those less fortunate. To date Lil BUB has directly raised more than $60,000 for various charities through her online store and meet-and-greets at animal shelters all of the country while spreading awareness about the importance of adoption, and spaying and neutering your pets. (1) While Bridavsky focuses on difference through the figure of Lil Bub’s cuteness, this does not detract from the potential cuteness has to expand normative horizons and go beyond acting in the service of enabling reductive norms. For instance, through Bridavsky’s initiative, Lil Bub has partnered with the American Society for the Prevention of Cruelty to Animals (ASPCA) to generate funds for cats with special needs. In this context, Lil Bub’s “cute-fied” disability enables humans to think charitably towards animals with disabilities, and brings awareness to animals with special needs. Moreover, the online presence of Lil Bub and other disabled animals, and their packaging as cute creatures, can operate in the service of disabled people. This is not to state that animals are only relevant in terms of human existence, but to specify that representations of disabilities can resignify normative ideas about disability as something that is other to the complexity of human existence. Viewing an animal’s disability online can be a recuperative process with humans with disabilities. For instance, Nancy, a person who commented on Carlson’s idea of “cute-ifying disability” on 24 February 2014, remarked: “Children identify with cartoons and animals. A lot. Children have told me how Winter the dolfin has a fake tail, and relate it to their leg brace. Or how they saw a dog in a wheelchair and they identified with it since they are in a wheelchair [sic]” (1). Conclusion As the examples above demonstrate, Lil Bub’s popularity can be read in terms of the interaction between the commodification and characterisation of animals as cute, the use of cuteness and disability to raise awareness and funding for charities, and the relationship between animals and humans as companions and sources of inspiration for one another. Cute-fying disability is informed through this complex assemblage that reorients one-sided ideas of cuteness as simply enabling ethical engagements with disability or disenabling such negotiations. At the heart of this is the question: “in whose interest is this for?” As Carlson notes, the issue is not so much in seeing animals as cute, but in not seeing humans with disabilities in a way that sees them as human beings (1). Carlson takes issue with the fact that the same level of benevolence and friendliness offered to disabled animals online is not extended to humans with disabilities. By this, Carlson is not suggesting that people see other people with disabilities as “cute”. Rather, she, like Garland-Thomson, advocate for the “process of dismantling the institutional, attitudinal, legislative, economic, and architectural barriers that keep people with disabilities from full participation in society” (75). The example of Lil Bub demonstrates the various ways through which these barriers are erected and challenged. For instance, Lil Bub has been framed in terms of a human/animal hierarchy that positions her as figure for human entertainment. Her disabilities have also positioned her within another kind of hierarchy wherein she is packaged as less complex and less threatening than “normal” cats, as suggested by the meme that claims that Lil Bub does not judge people, unlike other cats. Simultaneously, Lil Bub’s popularity has garnered awareness towards animals with disabilities and the help humans can offer to assist them. Moreover, Lil Bub, and other disabled animals that are represented as cute, are relatable as companions for humans and can be a source of inspiration for many people. In mapping out the nuances to cute-fying disability in Lil Bub’s case, this paper is not invested in stating whether cute-fying disability is wrong or right, but rather, to point towards the ways in which cute-fying disability can simultaneously work for and against ethical engagements with disability for humans and animals. References BigMamaDiva2. “Winn-ER son!!!” BigMamaDiva2, 2014. 10 Jan. 2014 ‹http://bigmamadiva2.blogspot.com.au/›. Bridavsky, Mike. Lil Bub: About. n.d. 2 Apr. 2014 ‹http://lilbub.com/about›. Carlson, Tiffiny. “Animals and Wheelchairs: Cute-ifying Disability.” Easy Stand Blog, 19 Feb. 2013. 17 Feb. 2014 ‹http://blog.easystand.com/2013/02/animals-and-wheelchairs-cute-ifying-disability/›. Dale, Joshua. Cute Studies, 2014. 17 Feb. 2014 ‹http://www.academia.edu/5132057/CFP_Cute_Studies›. Garland-Thomson, Rosemarie. “The Politics of Staring: Visual Rhetorics of Disability in Popular Photography.” In Disability Studies: Enabling the Humanities, eds. Sharon L. Snyder, Brenda Jo Brueggemann, and Rosemarie Garland-Thomson. New York: Modern Language Association, 2002. 56–75. Taylor, Paul W. “Are Humans Superior to Animals and Plants?” Environmental Ethics (Summer 1984): 149–160. Titchkosky, Tanya. The Question of Access: Disability, Space, Meaning. Toronto: University of Toronto Press, 2011. Weil, Kari. “Killing Them Softly: Animal Death, Linguistic Disability, and the Struggle for Ethics.” Configurations 14.1-2 (2006): 87–96. Wolfe, Cary. “Learning from Temple Grandin, or Animal Studies, Disability Studies, and Who Comes after the Subject.” New Formations (Spring 2008): 110–123.

Photo by Anna Hecker on Unsplash ABSTRACT All people deserve the legal ability to outline their care decisions in advance and expect their decisions to govern during a pregnancy. However, until advance directives govern without pregnancy exceptions, people will not uniformly retain the ability to formulate autonomous decisions about their health care planning. INTRODUCTION In the last few years, states have passed increasingly restrictive laws regarding abortion and reproductive health care. Recent legislation in Alabama effectively banned the procedure altogether, while more than a dozen states have passed or are currently in the process of enacting so-called “fetal heartbeat laws,” which ban abortion at roughly six weeks post-conception after the detection of electrical activity in what could develop into fetal cardiac tissue.[1] While courts rarely uphold outright bans and broad sweeping legislation, they garner significant media and public attention.[2] In practice, however, often smaller legislative changes that garner the least attention have the most significant impact by steadily chipping away at healthcare rights. Few people realize the ethical impact of the poorly understood legal means by which a pregnant woman has already lost her right to make autonomous healthcare decisions over her body using an advance directive in nearly every state. BACKGROUND Advance directives are one of modern medicine’s most powerful yet underused tools. Most clinicians and patients think of advance directives as being only for the elderly or terminally ill. This association stems from the 1991 Congressional Patient Self-Determination Act that requires hospitals, nursing homes, and hospice agencies receiving federal funding to inform patients of their legal right to prepare an advance directive. The 2015 announcement by the Center for Medicare and Medicaid Services (CMS) to reimburse for advance directives without requiring a diagnosis code recognizes that all adult patients can benefit from advance directives regardless of illness or life expectancy.[3] Providers should be aware of a small but significant exemption found in most state advance directive laws. This exemption, commonly known as the pregnancy clause, invalidates the advance directive of a pregnant woman, negating autonomy. The pregnancy clause can lead to treatment against medical standards of care and places private interests over public health. Advance directive statutes are frequently amended, but currently, only eight states allow patients to write their pregnancy-related wishes into their advance directive and guarantee that their instructions will be followed. Eleven states automatically invalidate advance directives during pregnancy, while 18 states permit physicians to disregard a pregnant woman’s (or her proxy’s) wishes based on the likelihood of viability, pain, and suffering, or conscientious objector clauses. Thirteen states remain silent on whether an advance directive is binding during pregnancy or have contradictory statutes.[4] Viability has no standard definition for the purposes of the clauses and viability-based pregnancy clauses can lead to the same loss of rights as pregnancy clauses that invalidate advance directives due to pregnancy without any exceptions. Many may wonder about the clinical relevance of pregnancy clauses. The likelihood that a woman will need to effectuate an advance care directive while pregnant is higher than many people would realize. This situation is most commonly assumed to occur in instances of a brain-dead pregnant woman, of which there are a few cases reported each year. But brain death and persistent vegetative states are just two reasons to look to an advance directive. Advance directives more commonly apply to patients with dementia, strong religious objections to medical care, or during cancer treatments, surgery, or acute injury with temporary loss of capacity. In surgery or acute lapses of capacity, a proxy may be asked to make decisions if complications arise. The number of women potentially affected by pregnancy clauses is significant. Each year, 75,000 pregnant women will undergo non-obstetrical surgery;[5] one in 1,500 pregnant women will be diagnosed with cancer;[6] and an estimated 250,000 Americans will exhibit early-onset Alzheimer’s symptoms between the ages of 30 and 50.[7] ANALYSIS Though pregnancy clauses are a seemingly narrow focus, they can nullify an entire advance directive and restrict care not related to the fetus. By negating entire advance directives, the clauses negate proxy appointments, allowing decision-makers other than the intended proxy. Providers and proxies are left with little guidance over who can make decisions on behalf of the patient. Many states will appoint a biological family member as the surrogate decision maker if there is no designated proxy or the directive is invalid. The outdated language and assumptions about nuclear families found in these structures could significantly impact unmarried couples, same-sex partnerships, and relationships that do not meet state-defined partnership standards where the courts may appoint someone other than the woman’s significant other even when she designated them as a proxy.[8] Members of religious groups whose doctrines prohibit certain medical therapies must be informed that if they become pregnant, their autonomous ability to decide about medical care through an advance directive and their right to freely practice religion can be voided entirely. In addition to infringing on patient autonomy, pregnancy clauses also restrict how clinicians might practice medicine by mandating medically inappropriate treatments against the provider’s recommendations. For example, Illinois’s pregnancy clause stipulates that “if you are pregnant and your health care professional thinks you could have a live birth, your living will cannot go into effect.”[9] This clause places providers in a difficult position of sacrificing their therapeutic obligation to their patients. It may require them to use futile therapy against the patient’s best interest and without regard for prolonged pain and suffering. Pregnancy clauses are void of any consideration of the best clinical interest of the patient or the fetus and instead promote conservative rhetoric that all potential fetal life is paramount. Numerous medical and chromosomal conditions are incompatible with life or present significant potential disabilities that may be accompanied by pain and suffering. The same conditions also pose risks to the mother, including death. Accordingly, the medical profession recognizes that there are instances in which it may not be in the best medical interest of the mother or the fetus to continue the pregnancy. Yet providers are seemingly required by pregnancy clauses to violate codes of conduct and subject pregnant patients and their nonviable fetuses to treatments to which other patients would not be subjected. Without evidence of a patient’s clear and convincing intentions, states have an interest in protecting life, preventing suicide, and maintaining the ethical integrity of the medical profession that could interfere with the person’s ability to refuse care.[10] The legal defense of pregnancy clauses is that the state’s interest in fetal life is sufficiently important to override the mother. As established in Planned Parenthood v. Casey (1992), however, the state’s interest only exists for fetal life post-viability.[11] Therefore, to allow the state interest to override the person’s advance directive when the fetus is not yet viable violates Casey. Individuals have a legal and ethical interest in maintaining bodily privacy, integrity, and freedom from unwanted touching. They have the right to appoint a proxy or use a directive to govern care in the case of incapacity. Even when contemplating brain death, organ donation, and whether to be cremated or buried, there is an expectation that personal wishes will govern. Honoring an advance directive allows providers to uphold the integrity of the medical profession by respecting the principles of autonomy and beneficence. Pregnancy clauses are inherently unethical as their creation was not to further the integrity of the medical or legal profession, nor protect a state’s interest in the patient’s life. In 2016, the American College of Obstetricians and Gynecologists issued a committee opinion that pregnancy is not an ethical exemption to the right of capable patients to refuse treatment.[12] The right to direct treatment while pregnant is consistent with modern medical practice, while the legislative promotion of a singular abstract interest in potential fetal life to the exclusion of all other medical and ethical considerations is not in line with the profession’s values.[13] Many pregnancy clauses are politically motivated, reflecting anti-abortion legality lobbying efforts and attempts to win over conservative voters. When Alaskan Attorney General Harold M. Brown argued the state’s pregnancy clause was unconstitutional, Governor Bill Sheffield – a Democrat in a historically red state – enacted the bill anyway. Georgia’s Governor Bill Kemp narrowly won his election, with some crediting his aggressive messaging against immigration and abortion.[14] With either advance directives, proxies, or even friends and relatives who know what the person (if not incapacitated) would have wanted, courts and legislatures should not have leeway to force care that a person, if conscious, would have refused.[15] The ability to harness advance directive law to force invasive and unwanted treatment upon a pregnant patient’s body continues to occur out of the fear of legal uncertainty. The lack of uniformity between states in their pregnancy clauses further adds to the confusion. Many advance directive statutes create a conditional proposition: if a provider acts in accordance with the carefully drawn circumstances of an advance directive, the provider is granted protective immunity from accusations of malpractice or wrongful death for that conduct. It is neither illegal nor unethical to remove a ventilator, for example, from a patient who has directed such a course of action in an advance directive. A pregnancy clause may remove that immunity making the unethical act of ignoring the directive legal, but the ethical act of following it (removing a ventilator, for example) could subject the practitioner to liability.[16] Without a pregnancy clause, providers retain the ability to both follow an advance directive and to act in the best medical interest of their patient. Pregnancy clauses create confusion over the permissibility of medical acts in an attempt to coerce providers into making decisions that violate the rights of their patients and their own ethical codes of conduct. Pregnancy clauses are a fallacy of consequentialist ethics in which the morality of the outcome justifies actions. Under consequentialist reasoning, any violation to the woman is justified if the fetus develops and results in a live birth. This reasoning is further faulty as it incorrectly assumes that mechanically ventilating an unconscious, sick, dying, or dead body will result in a live birth. Consequentialist theories should be limited to situations with predictable ends. Ethical medical providers refute consequentialism in certain contexts because it treats patients as a means to an end to produce benefit for others. In pregnancy, ignoring advance directives to achieve the chance that a fetus might survive is not justified by consequentialism. Pregnancy clauses also fail through the lens of deontological ethics in which an action must be ethical in and of itself and not based on outcomes. The choice to respect autonomy through an advance directive should be followed uniformly absent special circumstances. Proponents of pregnancy clauses may argue that pregnancy is an appropriate exception because a woman “has chosen to lend her body to bring [a] child into the world.”[17] Minnesota and Oklahoma echo this belief in their statutes, which contain an unjustified rebuttable presumption that all female patients would want life-sustaining treatment if they are pregnant.[18] Pregnancy should not abrogate the rights of a person to assign a proxy for access to an abortion or to control her medical treatment. Pregnancy exclusions are not grounded in the ethical “best interest” standards for the mother or the fetus. Instead, they are rooted in outdated expectations of female gender roles, which reaffirm a legislative assumption that a pregnancy is more morally valuable than a woman’s autonomy. CONCLUSION All people deserve the legal ability to outline their care decisions in advance and expect their decisions to govern during a pregnancy. Providers and the government do not have to approve of a person’s care decisions or values, but medical practitioners must respect a person’s right to dictate their own health narratives. With the push for more patients to execute advance directives, providers and patients must be aware that their advance directives may succumb to the authority of pregnancy clauses. Until advance directives govern without pregnancy exceptions, people will not uniformly retain the ability to formulate autonomous decisions about their health care planning. Advance directive law will continue to be hijacked by politically motivated legislators. When seeking to address inequities in healthcare laws and access, it is essential to take a closer look at not only the headline cases but also the clauses and exemptions to laws seemingly designed to benefit patients. [1] For proposed and current abortion legislation and maps, see https://www.guttmacher.org/state-policy# and Anne Godlasky, Nicquel Terry Ellis, and Jim Sergent, “Where is Abortion Legal? Everywhere, but…” USA Today, May 15, 2019, updated April 23, 2020 https://www.usatoday.com/in-depth/news/nation/2019/05/15/abortion-law-map-interactive-roe-v-wade-heartbeat-bills-pro-life-pro-choice-alabama-ohio-georgia/3678225002/ [2] https://www.guttmacher.org/state-policy# (Many bills fail in legislatures and are not enacted.) [3] Department of Health and Human Services Centers for Medicare & Medicaid Services; 42 CFR Part 405, 410, 411, 414, 425, and 495; “Medicare Program; Revisions to Payment Policies Under the Physician Fee Schedule and Other Revisions to Part B for CY 2016; Final Rule.” [4] DeMartino, E. S., Sperry, B. P., Doyle, C. K., Chor, J., Kramer, D. B., Dudzinski, D. M., & Mueller, P. S. (2019). US State Regulation of Decisions for Pregnant Women Without Decisional Capacity. JAMA, 321(16), 1629–1631. https://doi.org/10.1001/jama.2019.2587; Villarreal, Elizabeth. “Pregnancy and Living Wills: A Behavioral Economic Analysis.” The Yale Law Journal Forum. Vol. 128 (2019); 1052-1076. [5] “Surgery During Pregnancy.” Intermountain Healthcare: Fact Sheet for Patients and Families, (2018). https://intermountainhealthcare.org/ext/Dcmnt?ncid=520782026 [6] Basta, P. Bak, A. Roszkowski, K. “Cancer Treatment in Pregnant Women”. Contemporary Oncology, 19, no. 5 (2015): 354–360 [7] “31-Year-Old Woman Fights Alzheimer's While Pregnant.” San Francisco Globe. 9 July 2015, sfglobe.com/2015/02/19/31-year-old-woman-fights-alzheimers-while-pregnant. [8] “Health Care Proxies.” Human Rights Campaign, https://www.hrc.org/resources/health-care-proxy. [9] Illinois Department of Public Health website, Statement of Illinois Law on Advance Directives and DNR Orders, http://www.idph.state.il.us/public/books/advdir4.htm. [10] In the Matter of Karen Quinlan, 355 A.2d 647 (1976); Cruzan v. Director, Missouri Department of Health, 497 U.S. 261 (1990); and In re Conroy 486 A.2d 1209 (1985). [11] Planned Parenthood of Southeastern Pennsylvania v. Casey, 505 U.S. 833 (1992). [12] The American College of Obstetricians & Gynecologists Committee on Ethics, Committee Opinion No. 664: Refusal of Medically Recommended Treatment During Pregnancy, (2016). [13] Lederman, Anne D. “A Womb of My Own: A Moral Evaluation of Ohio’s Treatment of Pregnant Patient’s with Living Wills”. Case W. Res. L. Rev. Vol. 45:351 (1995); 351-377. [14] Tavernise, Sabrina. “The Time Is Now: States Are Rushing to Restrict Abortion, or to Protect It.” The New York Times, 15 May 2019. [15] Cruzan. [16] Mayo, T.M. “Brain-Dead and Pregnant in Texas.” The American Journal of Bioethics, Vol. 14, no. 8 (Nov. 2014); 15-18. [17] In re A.C., 573 A. 2nd 1244 (1990). [18] Johnson, Kristeena L. “Forcing Life on the Dead: Why the Pregnancy Exemption Clause of the Kentucky Living Will Directive Act is Unconstitutional.” Kentucky Law Journal. Vol. 100 (2011-12); 209-233.

Introduction One in three Australian marriages ends in divorce (ABS, Parental Divorce). While such statistics may be interpreted to mean that marriage is becoming less significant to Australians, many Australians continue to invest heavily in marriage as a constitutive mode of subjectification. Recently released first-wave data from a longitudinal study being conducted with seven thousand high school students in Queensland indicates that the majority of high schoolers expect to get married (Skrbis et al. 76). Significant political attention and debate in Australia has centred on the issue of marriage “equality” in relation to legislating same-sex marriage. Many accounts problematise marriage in Australia today by focussing on the current inequities involved in who can and cannot legally get married, which are important debates to be had in the process of understanding the persistent importance of marriage as a social institution. This paper, however, provides a critical account of “equality” in contemporary heterosexual marriages or heteronormative monogamous relationships. I argue that, far from being a mundane “old” debate, the distribution of unpaid work between spouses has a significant effect on women’s spousal satisfaction, and it calls into question the notion of “marriage equality” in everyday heterosexual marriages whether these are civil or common law relationships. I suggest that the contemporary “Hollywood” fantasy about marriage, which informs the same-sex marriage movement, sets up expectations that belie most people’s lived realities.Project Overview This paper draws on data from a larger research project that explores the impact of globalised ideas about good womanhood and good motherhood on Western Australian women, and how local context shapes these women’s personal ideals about their own life trajectories. Interviews were conducted with a series of women living in regional Western Australia. While more women were interviewed as part of the larger research project, this paper draws on interviews with seven intending-to-mother women and fifteen mothers. Through several open-ended questions, the women were asked about either their plans for motherhood or their experiences of motherhood, in relation to additional expectations of women’s lives, such as participation in the paid sector and body ideals. Married women were also asked about how unpaid labour—that is, domestic and, where relevant, childcare labour—is divided between themselves and their husbands. Women’s responses to these questions provide a critical account of how marriage and the notion of “equality” is currently lived out in Australia. To ensure confidentiality, their real names have been replaced by pseudonyms. My purpose in drawing on my own data in conjunction with literature on the gendered division of unpaid labour is to emphasise that while the theoretical insights are not new, the fact that a gendered disparity continues to exist is of concern because of women’s dissatisfaction with the situation, particularly in the context of frequent claims that equality is already achieved, and given that it queries the fantasy of marriage continuing to circulate in contemporary culture. The women I interviewed responded openly to questions about the division of domestic, and where relevant, childcare labour and the affects of this on their relationships. Feminist approaches to the research process highlight the importance of being reflexive about the relationship(s) between researcher and researched to make the presence of the researcher in the research process explicit (Ramazanoglu and Holland 156). Ramazanoglu and Holland argue “producing knowledge through empirical research is not the same as acting as a conduit for the voices of others” (116). While the power dynamic between researcher and researched is not generally an equal one, the fact that I am younger than all of my participants bar one (who is the same age) I believe went some way towards diffusing my position of power in the interviews. Some of my participants were also either already known to me, or had been referred to me by another participant prior to the interview, which may have made the process of interview less intimidating and more comfortable. Importantly, in many instances, my participants’ reflections about the division of unpaid labour in their marriages, their expectations, hopes for the future, and feelings about it mirrored my own feelings and realities. I related personally to their experiences, and empathise with their dilemmas. This is significant methodologically because “emotional connectedness” (Coffey 158–9) including a close identification with participants (Conle 53–4) influences the process of interpretation. However, in Scott’s terms, power operated through my assessment of participants’ dilemmas being similar to my own and my writing up of their interviews (780). The findings presented in this paper are based on my interpretation of the voices of others, and are unavoidably influenced by my personal context as the researcher. Two predominate themes emerged from women’s accounts of unpaid domestic and childcare labour. Women anticipated their partner’s participation in domestic care activities, although in most cases, this expectation was not met. Further, women held these expectations for “when they had children,” even though their partners did not presently participate in domestic activities. At the same time, the women accepted that, while their husband’s should participate more in unpaid work, this participation would not be equal to their own responsibilities regardless of what other activities either were engaged in outside of the domestic and familial sphere. I found that while women expect a fairer division of domestic labour, they do not expect it to be “50/50.” I argue that the gendered division of labour has changed less than most couples readily admit, as seen through the following overview. Gender Relations: Changes and Stases In Western societies, women’s roles in the public sphere have changed considerably over the last fifty plus years. Women now constitute a significant percentage of the paid workforce. Today, couple families where both partners work in the paid sector are the most common of all families (ABS, Family Functioning). However, there has not been a corresponding shift in the way that unpaid labour is divided between partners. Only one half of the historical gendered division of labour has undergone change; while women as well as men now operate in the paid (and thus valued) sector (traditionally available only to men), women still predominately perform most of the unpaid (and undervalued) domestic work. Gender researchers have been reporting on the unequal division of domestic labour between couples, and the material and emotional consequences for women, for a long time (see Hochschild; DeVault; Coltrane), yet I argue that it remains largely unchanged, and dismissed as an important issue in the Australian community. Hochschild’s work, in particular, made a significant contribution to research into the gendered division of unpaid labour between couples by analysing and reporting on interview data collected from fifty couples, both working full-time in the paid sector, with young children. Hochschild identified and reported on couples justifications for the way they divide domestic and care, which, as I will demonstrate, are still common today (17, see also Hochschild with Machung 128). Several contemporary studies (Meisenbach; Shelton and Johnson) report that women perform the majority of domestic and care duties, despite women’s long established presence in the paid workforce. Indeed, historically, the majority of women participated in the workforce, with only middle and upper-class women experiencing a delayed entry to paid work. In their review of current research into the division of household labour in the United States Lachance-Grzela and Bouchard find that: In spite of women’s increased commitment to the labour force market and their associated political and social achievements, their advances have not been paralleled in the familiar sphere…the gains women have made outside the home have not translated directly into an egalitarian allocation of household labour…[American] women continue to perform the vast majority of unpaid tasks performed to satisfy the needs of family members or to maintain the home. (767) Exchange theories predicted that women’s increased participation in paid work would stimulate an increase in the time men spent performing domestic work (Carter 16). However, various studies including Lupton’s investigation into the distinctions, or indeed, commonalities, between the roles of “mother” and “father” find that women still perform the majority of childcare and domestic labour, even those who are also engaged in paid employment. Time use studies conducted by the Australian Bureau of Statistics also suggest that this prediction has not eventuated, and that whilst some women may have an improved capacity to negotiate with their partners about domestic labour division because of their income, this is not always the case (Carter 17). Ella (aged 32, mother of one) described “quite enjoying it” when her partner was away on business because it was less work not having to deal with his mess on top of other tasks. This is consistent with earlier research findings that single mothers spend less time on domestic work than women with children who live with men (Carter 17). It is common for men to do less domestic work than they create (Bittman 3). All of the women I interviewed who were in partnerships and intending to mother sometime in the future were either employed full-time in the paid sector, seeking full-time employment after completing graduate degrees, or combining paid work with tertiary study. One participant had recently dropped her hours from full-time to part-time because she was pregnant. All of the partnered women who were already mothering at the time of the interview were in full-time employment before the birth of their first child, and seven of them were still in paid employment; one full-time, one three-quarter time and five part time. Most women reported doing the majority, if not all, of the domestic and childcare labour regardless of whether they combined this work with paid work outside of the home. Whilst some women were indifferent to the inequity in their domestic labour and childcare responsibilities, most identified it as a source of tension, conflict, and disappointment in their spousal relationships. These women had anticipated greater participation by their husbands in the home, an optimism derived from some other source than those women with whom they interact.Anticipating Participation In their in-depth psychological study into the specific temporal disruptions and occasions of social dislocation ensuing from the birth of a child in the United States, Monk et al. found that the disruption to daily events and the reduction of social activities were more discernible for women than for men. Other research (Arendell; Hays; Mauthner; Nicolson) conducted at this time concurred with these findings. Similar results are found over a decade later. Choi et al. found most women feel at least some resentment about the impact of parenthood on their lives being “far greater for them than for their partner” (174). Influenced by reports of a supposed ideological shift in the late 1990s wherein fathers were encouraged to take a more active role in the raising of their children in ways previously considered maternal (Lupton 51), women today tend to anticipate that their husband’s will participate more in domestic and care activities, which predominately, does not eventuate. Consequently, feeling “let down” by partners has been identified as a key factor in the presentation of postnatal depression (Choi et al. 175). The women I interviewed who were planning to mother sometime in the future anticipated that their husbands would participate more in the home after the birth of a child. Gabrielle (aged 25, married for three years) hoped that this would be an 80/20 split. The idea of an 80/20 split as an “improvement” may be confronting, but this is Gabrielle’s reality, and her predicament—shared by many other women today—captures the prevailing importance of discussions around the gendered division of domestic labour. Several interviewees who were already mothering had also anticipated that their husbands would participate alongside them in household and childcare related activities. For most, this kind of participation had not eventuated and women were left with feelings of disappointment, and tensions and conflicts in their marriages. Grainne (aged 30, married for five years, mother of one) had expected her husband to be reasonably supportive and helpful around the house when they started their family. Yet she was unpleasantly surprised and intensely disappointed by how participation in the home had worked out since she and her husband had become parents six months ago. Grainne explained that she: expected that my husband would be more supportive and more helpful…I’ve been even more disappointed because he hasn’t followed through with…how I thought he would be…I almost despair a bit…we have actually struggled more in our relationship in the last six months than in the five and a half years. Grainne spoke about the impact of this inequity on the intimacy in her relationship. This is consistent with Pocock who identifies inequity in the division of unpaid work as one of “two work-related spokes in the wheel” (106–107) of spousal intimacy; the other being time and energy to communicate. According to Pocock intimacy, not necessarily sexual, is lacking in many Australian spousal relationships with unequal divisions of unpaid labour (107). While the loss of intimacy results in feelings of loss and regret, for some women, it is characterised as a past concern in their overworked and stressed lives (Pocock 107). Several women from professional backgrounds, in particular Lena and Freya, identified the inequity in their partnerships when it came to home duties and childcare as a significant, and even as the “main,” source of tension and conflict in their spousal relationships. Lena (aged 30, married for five years, mother of two) described having “great debates” with her husband about the division of domestic labour and childcare in their partnership. From her husband’s perspective, it is her “job…to do all the kids and the housework and everything else,” whereas from Lena’s perspective, “he should be able to feed the kids and clean up” on the weekend if she needs to go out. Freya (aged 30, married for ten years, mother of three) also talked about the “various rows” she had had with her husband about her domestic and childcare load. She described herself as “not coping” with the workload. For all of these women, domestic inequality in their marriages has real emotional consequences for them as individuals, and is a significant source of marital discontent. Women’s decisions about whether and when to have children, and how many to have, are influenced by the inequity experienced in marital relationships. Although I suggest that women’s desire to become mothers may eventually outweigh these immediate and everyday concerns, reports from already mothering women suggest that this source of conflict does not dissipate. The evidence gathered from my interviews demonstrates that trying to change dynamics in a relationship, when it comes to domestic tasks, is even more difficult when it is compounded with the emotional, mental and physical demands of motherhood, as Choi et al. also suggest (177).Accepting Inequality The findings of my study suggest that women intending to mother and those already mothering continue to expect to do more domestic and childcare labour than their partners. However, even with this concession, some women are still over-optimistic in their estimations about the amount of domestic labour their partner’s will perform. Fetterolf and Eagly find similar patterns in gender equality expectations in the United States amongst female college undergraduates planning to mother sometime in the future (90–91). Some women I interviewed who were planning to mother sometime in the future described their own attempts to negotiate with their partner to make them do more work. For instance, Gabrielle (aged 25, married for three years), who, as discussed earlier, hoped that her husband will participate more in the home after the birth of a child, said: Once we’ve had kids he might change and realise he might have to help out a little bit more, I can’t actually do everything…I don’t think it’ll be 50/50 just from experience of how we’ve been married so far… I do hope that it’ll be maybe 80/20 or something like that. When asked about whether their current division of house work was a concern for her, particularly in relation to having children, Gabrielle replied that she just “nagged” about it. Putting her discontent in the frame of “nagging” trivialises the issue. While it is men who tend to characterise women’s discontent as “nagging,” women can also internalise, and use this language to minimise their own feelings. That men “just don’t see mess and dirt” in the same way that women do is a popular idea drawn on to account for women’s acceptance of inequity in the home as evidenced in numerous statements from the women I interviewed. Commentaries like these align with Carter’s (1) observations that generally accepted ideas about women and men (for example, that women see dirt and men do not) are drawn on to explain and justify domestic labour arrangements. In response to how domestic labour is divided between her husband and herself, Marguerite (aged 25, married for ten months), like Gabrielle (aged 25, married for three years), described an “80/20 split,” with her as the 80%. Marguerite commented that “it’s not that he’s lazy, it’s just that he doesn’t see it, he doesn’t realise that a house needs cleaning.” Fallding described these ideas, and the behaviours that ensue, as a type of patriarchal family model, specifically “rightful patriarchy” (69) that includes the idea that women naturally pay more attention to detail than men. Conclusion “Falling in love” and “getting married” remains an important cultural narrative in Australian society. As Gabrielle (aged 25, married for three years) described, people ask you “when are you getting married? When are you having kids?” because “that’s just what you do.” I argue that offering critical accounts of heteronormative monogamous relationships/marriage equality from a variety of positions is important to understandings of these relationships in contemporary Australia. Accounts of the division of unpaid labour in the home between spouses provide one forum through which equality within marriage/heteronormative monogamous relationships can be examined. A tension exists between an expectation of participation on the part of women about their partner’s role in the home, and a latent acceptance by most women that equality in the division of unpaid work is unrealistic and unachievable. Men remain largely removed from work in the home and appear to have a degree of choice about their level of participation in domestic and care duties. The consistency of these findings with earlier work, some of which is over a decade old, suggests that the way families divide unpaid domestic and care labour remains gendered, despite significant changes in other aspects of gender relations. Many of the current discussions about marriage idealise it in ways that are not borne out in this research. 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