Having and raising children is widely regarded as one of the most valuable projects a person can choose to undertake. Yet many disabled people find it difficult to share in this value because of obstacles that arise from widespread social attitudes about disability. A common assumption is that having a disability tends to make someone unfit to parent. This assumption may seem especially relevant as a factor in decisions about whether to allow, encourage and assist disabled people to reproduce and (...) raise children. Yet there are reasons to doubt whether there is such a close connection between having a disability and lacking the ability to raise a child well. The aims of this paper are, first, to identify and clarify some values that are relevant to questions about allowing, encouraging and assisting disabled people to procreate and raise children, second, to give an overview of how these values can help us to address certain legal questions that arise for disabled people who aim to procreate and parent, third, to raise concerns about how to properly assess the parenting capacities of people with disabilities, and fourth, to suggest some ways in which having a disability can actually make someone a better parent. (shrink)

Parenting a child with a disability presents unique challenges and requires additional care and attention. Parents play a crucial role in promoting their child’s development, fostering their independence, and nurturing their overall well-being. This research study aims to investigate the adequacy of resources and support available to families of children with disabilities, as well as the perception of parents regarding these aspects. A specially designed questionnaire consisting of 21 questions was used as the research instrument, (...) which was distributed to families through a Google form. The research sample was convenience-based and comprised 250 parents of children with disabilities. The findings of the study reveal widespread dissatisfaction among parents in relation to institutional support. The results indicate that a significant majority of parents (80%) do not receive adequate institutional support, while only 1% reported receiving it. Furthermore, not a single parent reported being satisfied with the coordination among medical, educational, and social institutions, with 56% expressing dissatisfaction and 44% indicating partial satisfaction. This study highlights the need for improved coordination among various institutions, increased parent education, and the provision of comprehensive support services to ensure a better quality of life for families of children with disabilities. (shrink)

This article has been designed in the context of the religious education needs of parents with orthopedically disabled children and their views on the content and method of this religious education. The aim of the study is to reveal the religious education needs of parents with orthopedically disabled children and their views on the content and method of religious education from a descriptive point of view. In this study, one of the qualitative research methods case study (...) was preferred. The study group consists of 20 parents determined by the maximum diversity sampling, one of the purposive sampling methods. The data were analyzed by coding according to the themes and titles determined in the context of the problematic of the study with the descriptive analysis method. As a result of the study, it was determined that parents need religious education based on the opinions of the parents. Parents suggested that the content of religious education for them could be in the form of the convenience in which religion provides for the disabled, the place of disability in religion, the test and the contribution of belief in the hereafter to the disabled. Parents think that it would be beneficial to provide them with religious education by preparing books and brochures on disability and by organizing religious education programs at home and in rehabilitation center. (shrink)

Cognitive enhancement is an increasingly discussed topic and policy suggestions have been put forward. We present here empirical data of views of parents of children with and without cognitive disabilities. Analysis of the interviews revealed six primary overarching themes: meanings of health and treatment; the role of medicine; harm; the ‘good’ parent; normality and self-perception; and ability. Interestingly none of the parents used the term ethics and only one parent used the term moral twice.

Fertility specialists, adoption agents, judges and others sometimes take themselves to have a responsibility to fairly adjudicate conflicts that may arise between the procreative and parenting interests of people with disabilities and the interests that their children or potential children have to be nurtured, cared for and protected. An underlying assumption is that having a disability significantly diminishes a person's parenting abilities. My aim is to challenge the claim that having a disability tends to make someone a bad (...) parent by arguing that the interests of prospective parents with disabilities and the interests of their children or potential children are often aligned and mutually supporting. (shrink)

The case presented here is tragic, not just in the sense of being a sad story, but in the dramatic meaning of tragedy. It presents us with a situation where there is no clear path, where moral ambiguity exists, and where no possible solution could unequivocally be declared the right or good one. Ethical deliberation can help here, but only as a way of clarifying the issues and offering reasonable solutions. It cannot show us the one right way.Baby G (...) has profound medical conditions, including respiratory failure, a chest wall deformity that will require surgery, and profound neurodevelopmental disability. Even a best case scenario portends a shortened lifespan and.. (shrink)

Being the parent of a disabled child is not easy, it is experienced as a situation marked by stress, crises and grief. As Vygotsky described eighty years ago, the development of children with disabilities and the culture do not fit as they do for non-disabled children. The development of a child with disabilities is not determined by the child’s physical defect alone, but constituted by the incongruence between the physical defect and the culture. In this study, (...) the lives of four families with deafblind children were followed for two years. Interviews and observations were conducted in different settings. This study finds that because of the incongruence between the physical defect and the culture, it is difficult to reach and maintain the zone of proximal development for a child with disabilities. This study illustrates how the network of professionals and parents around the child can make a local congruence that creates a platform for the child’s development. (shrink)

Research shows that a high majority of parents receiving prenatal diagnosis of intellectual disability terminate pregnancy. They have reasons for rejecting a child with intellectual disabilities—these reasons are, most commonly, beliefs about quality of life for it or them. Without a negative evaluation of intellectual disability, their choice makes no sense. Disability-based abortion has been critiqued through virtue ethics for being inconsistent with admirable moral character. Parental selectivity conflicts with the virtue of acceptingness and exhibits (...) the vice of wilfulness. In this paper I claim that, beyond failures of moral virtue, disability abortion often involves failures of epistemic virtue on the part of parents. I argue two things: parents believe something false, or at least contested, about life with intellectual disability—and they do so because they are not epistemically conscientious. I first explain why a central motivation for disability abortion—that it prevents harm to the child—is mistaken. I next give a brief account of intellectual virtue and culpable ignorance. I then indicate why many parents fail to be intellectually virtuous when choosing to terminate pregnancy. I focus on elimination of intellectual disability and have little to say about physical and sensory impairments. (shrink)

BackgroundThere is little information on how adverse experiences in early life are associated with the risk of having a child with health problems and whether the health of racial and gender minority groups would be particularly compromised if they have developmentally disabled children.ObjectiveBy integrating life-course perspectives and the intersectionality framework, we examine the extent to which parents’ early-life adversities are associated with having children with DD or other health issues and whether the association between having (...) DD children and parental health varies across race–gender groups after accounting for ELAs.MethodsUsing data from Black and White parents from the Midlife in the US Study, we employed multinomial logistic regression models to investigate the degree to which ELAs are associated with parenting types and multiple regression models with a three-way interaction term to investigate whether the gender–parenting type association differs by race.ResultsWith more adversities, the probability of having children with health issues increases for all race–gender groups, but most dramatically for Black women. Having DD children is associated with more chronic illnesses and functional limitations for women than men, with the largest burden for Black women, yet neither gender nor racial differences in depressive symptoms. Our results highlight that while raising children with DD takes a toll on the health of all parents, the strain might be larger for Black mothers.ConclusionThe adverse effects of parenting a child with DD is more pronounced for Black women than for other race–gender groups indicating opportunities to promote community-based programs for these parents. (shrink)

The notion of being a burden to others is mostly discussed in the context of care‐intensive diseases or end‐of‐life decisions. But the notion is also crucial in decision‐making at the beginning of life, namely regarding prenatal testing. Ever more sophisticated testing methods, especially non‐invasive prenatal testing (NIPT), allow the detection of genetic traits in the unborn child that may cause disabilities. A positive result often influences the decision of the pregnant women towards a termination of the pregnancy. Thus, critics (...) claim that these testing methods send a negative message to people with disabilities. At the core of this is what we call the burden assumption. This assumption claims that children with disabilities are necessarily a burden to others, especially to their parents and other family members. In this paper, we discuss what being a burden to others means in this context and how such an attitude can be avoided without restraining reproductive autonomy. A closer examination shows that the burden assumption is mostly based on misinformation and a false model of disability. Empirical studies as well as narrative evidence from parents who raise a child with disabilities show that the burden assumption is wrong. Raising a child with disabilities does not necessarily mean a decrease in the quality of life. We show how the burden assumption can be challenged through an advanced genetic counselling that combines empirical evidence with narratives from a first‐person perspective. (shrink)

Some studies report that the sport context increases the risk of exposure to sexual violence for athletes. In contrast, others indicate a protective effect of sport participation against sexual violence, particularly among varsity athletes. Studies of sexual violence towards varsity athletes are limited by their failure to include control groups and various known risk factors such as age, graduate level, gender and sexual identity, disability status, international and Indigenous student status, and childhood sexual abuse. The purpose of the present study (...) is to fill in these gaps to determine whether varsity athletes are at greater risk than non-athletes of sexual violence towards them or whether, on the contrary, involvement in a varsity sport is coherent with the Sport Protection Hypothesis. Data for this article come from the ESSIMU study, a broad survey of students, professors, and other employees at six francophone universities regarding sexual violence on university campuses. A total of 6,485 students with complete data on sexual violence, athlete status, and gender were included in the study. From this total, 267 participants identified themselves as varsity athletes. Data were analyzed using a series of logistic regressions on each form of violence using athlete status as a predictor and characteristics associated with sexual violence victimization or distinguishing between varsity athletes and non-athletes as confounding variables. When considering all confounding variables in the regression analyses on four yearly incidence rates of sexual violence, the results revealed that being a varsity athlete did not significantly increase the risk of exposure to sexual violence at university. All considered other variables were more significant predictors of the past year’s risk of sexual violence victimization than athlete status was. (shrink)

Like any philosophically interesting health care practice, ethical analysis of Pre-implantation Genetic Diagnosis has produced a wide range of moral positions. For example, one might contrast David King's view that warns PGD should be strictly limited and regulated because it will soon result in the expansion of a troubling "laissez-faire eugenics" with Julian Savulescu's argument for the "principle of procreative beneficence" morally requiring parents to use information attained through PGD to select the "best child". That is, these authors (...) represent two poles of a sort of moral spectrum regarding PGD. At one end, we have a deep suspicion of the technology as directly leading to... (shrink)

Prevailing philosophies about parental and other caregiver responsibilities toward children tend to be protectionist, grounded in informed benevolence in a way that countenances rather than circumvents intrusive paternalism. And among the kinds of children an adult might be called upon to parent or otherwise care for, children with disabilities figure among those for whom the strongest and snuggest shielding is supposed be deployed. In this article, we examine whether this equation of securing well-being with sheltering by protective (...) parents and other care-givers should unreflectively be adopted for disabled children. We also consider why healthcare providers might reasonably be reluctant to yield to this principle, even if parents instinctively suppose that protectionism is the parenting policy that best serves their disabled child’s interest. We contend that caregivers owe children with disabilities at least as much, and possibly more, respect for self-governance than other children need. In spite of disabled children’s vulnerability and even in view of it, we argue that they should be accorded not only welfare rights to well-being but at least a modified version of liberty rights as well. Healthcare providers are especially favorably positioned to facilitate the latter response. The main components of respectful caregiving can come into conflict with one another, but we present some priorities that advise against adopting a protectionist account of parenting rights, or at least against accepting protectionist views that focus parenting narrowly on shaping ideas about the child’s welfare. In sum, caring for a disabled child, we argue, involves more than creating conditions that will afford her contentment and comfort over the course of life. (shrink)

This paper discusses ethical dilemmas related to social work practice with young adults with autism. It does so via the use of a case study taken from real life practice. The different viewpoints and ethical frameworks of the young person, the young person's parents and the Local Authority (or the Local Authority social worker) are considered and discussed. The competing rights of the 2006 United Nations Convention on the Rights of Persons with Disabilities (and the (...) Optional Protocol) are also considered. (shrink)

This paper provides various perspectives of scholars on inclusive education throughout its history and the role of an inclusive teacher in inclusive education schools with specific focus on children with disabilities that attend regular classes with their non-disabled peers. The paper is based on the literature review of various research papers and studies that were published by prominent and specialized scholars, institutions and relevant organizations in the field of inclusive education, with a focus on disabled (...) children and their rights to have equal chances for education in regular schools with their peers. The paper further reflects teachers experience and perception on the inclusive education process and the challenges they face in this regard. Finally, the paper provides various views on what is expected by an inclusive teacher and what type of support and assistance they need to get from other educators and teachers specialized in education of children with disabilities in order to meet children’s needs in the context. The paper also describes the importance of inclusive teacher’s collaboration with the school management, children’s parents and caregivers and other relevant specialists in order to understand the specific background of child’s type of disability with the aim of adapting his teaching methodology, tools and materials as per child’s specific needs for an individualized education planning if needed. (shrink)

This Article examines the influence of the Americans with Disabilities Act (ADA) on affective attitudes toward children with disabilities and on the incidence of disability-selective abortion. Applying regression analysis to U.S. natality data, we find that the birthrate of children with Down syndrome declined significantly in the years following the ADA's passage. Controlling for technological, demographic, and cultural variables suggests that the ADA may have encouraged prospective parents to prevent the existence of the very (...) class of people the Act was designed to protect. We explain this paradox by showing how specific ADA provisions could have given rise to demeaning media depictions and social conditions that reinforced negative understandings and expectations among prospective parents about what it means to have a child with a disability. We discuss implications for reproduction law and antidiscrimination policy. (shrink)

Despite the 1970s middle-class feminist dream that women could have it all—families characterized by equitable distributions of household labor and interesting careers—the decades since have told a different story. In the U.S. context of a neoliberal labor market and privatized systems of family care, mothers still struggle to negotiate the conflicting demands of family and employment, particularly when caring for children with disabilities. Though an extensive literature examines labor market participation for mothers of children with disabilities, (...) few scholars have examined the emotional impact of their altered career plans. Drawing from a sample of 40 single- and two-parent families, the author examines mothers’ accounts of care for children with disabilities, focusing on their emotional experiences of their changed employment trajectories. (shrink)

The design, implementation, and outcome of game-based learning for learners with disabilities have not been sufficiently examined systematically. Particularly, learner-based and contextual factors, as well as the essential roles played by various stakeholders, have not been addressed when game-based learning applications are used in special education. Therefore, a systematic literature review using the Activity Theory was conducted to analyse studies about game-based learning for learners with disabilities. Content analysis of 96 studies reported relevant information with (...) respect to each activity component— subject, technology, object, rules, community, division of labour and outcome. Furthermore, this study identified existing gaps from the reviewed studies, including occasional lack of parental engagement, difficulty of standardising performance measures due to the heterogeneity of learner profiles and contradictions. Finally, recommendations were made under each activity component. The study concluded that both general and domain-specific guidelines should be created for each disability category proposed in this review to assist practitioners who wish to use game-based learning with learners with disabilities. (shrink)

The purpose of the study is to determine the personal results of students with disabilities and to identify the necessary conditions for effective work with this category of children in distance learning. The analysis of the results revealed the need for the use of subject-oriented technology in the educational process, which contributes to the formation of the subjective position of students, allowing for the individualization of the educational process, maximally compensating for developmental deficits caused by diseases. As (...) a result, the necessity of organizing purposeful career guidance work with disabled children and educational work with parents was revealed. (shrink)

The partnership of educators and parents of children with developmental disabilities is important for early intervention, as an integrated and interdisciplinary system of professional services intended for children of an early age with developmental disabilities and children who may be late in starting school due to inadequacy: nutrition, chronic diseases, biological and environmental factors. The aim of the research is to examine the assessments of educators and parents about the involvement of families of children (...) with developmental disabilities in kindergarten activities. It started from the general assumption that there is a difference in the assessments of educators and parents about family involvement in kindergarten activities. The research conducted in October 2022 included 167 educators and 167 parents in the area of Kikinda and Sombor (Serbia), who assessed family participation in kindergarten activities (PP) for 167 children aged five to seven. The quality of cooperation was examined with the Subtest Parents’ involvement in kindergarten activities. This subtest forms part of the Parental Involvement Questionnaire (Fantuzzo et al, 2000) adapted for this research (a = 0,921). The research results show that there is a significant difference in the assessments of educators and parents in the area of family involvement in kindergarten activities. It was concluded that there is a need for planning guidelines and implementation of procedures that would enable parents to participate in kindergarten activities. The application of the new Program Basis in the context of cooperation between preschool institutions and parents would contribute to the improvement of project planning of learning and teaching in pedagogical practice. This would help parents better understand project-based learning and the importance of participating in kindergarten activities. (shrink)

The perceived meaning of life significantly affects the quality of human life. It is of particular significance in borderline situations. One of such situations is the birth of an intellectually disabled child. The article presents the results of the study concerning the perceived meaning of life in the case of parents who bring up a child with limited intellectual abilities. The study included 87 mothers and 65 fathers bringing up an intellectually disabled child. In the studied cases, (...) class='Hi'>parents perceived their life as highly meaningful. The results indicated that the perceived meaning of life in the case of parents of intellectually disabled children was related with: suffering experienced by the parents as a result of a limited intellectual ability of their daughter/son, the manner of performing their parental role and the sense of parental identity. (shrink)

In his recent paper, Adam Cureton presents a compelling case in support of the right of parents with disabilities to conceive and raise children. Cureton argues that caring for a parent with a disability may be beneficial for a child and the creation of a child with the intention of him/her being a carer for his/her disabled parent is objectionable. This response to Cureton's paper will focus on the creation of children with the purpose (...) of them being carers for their disabled parents. I will respond to Cureton on three counts. First, I propose that claims and are incompatible. Second, I will argue that even from a Kantian perspective it is not clear that creating a child as a carer is objectionable. Third, I will argue more broadly that the intentions with which parents bring children into the world are not predictive of the concern parents should show their children once they come into existence. (shrink)

The view that it is better for life to be created free of disability is pervasive in both common sense and philosophy. We cast doubt on this view by focusing on an influential line of thinking that manifests it. That thinking begins with a widely-discussed principle, Procreative Beneficence, and draws conclusions about parental choice and disability. After reconstructing two versions of this argument, we critique the first by exploring the relationship between different understandings of well-being and disability, and the (...) second by more briefly focusing on the idea of a significant reason. By placing these results against the broader historical and ongoing contexts in which the lives of those with disabilities have been deemed of inferior quality, we conclude with a call for greater humility about disability and well-being in thought and practice. (shrink)

In this chapter I discuss the particular situation of being at the intersection of disability and child poverty. I then give a thick description that shows what it is like to be a nondisabled white girl living in poverty with two parents with disabilities—I give my own story. Then I offer some empirical facts to demonstrate the problems distilled from the thick description: custody challenges, child as carer, unemployment, charity, and lack of choice. I then discuss (...) stigma from a theoretical point of view. I put forward a view of ontological vulnerability that is more expansive than Martha Fineman’s or Catriona Mackenzie’s using Judith Butler’s and Jackie Leach Scully’s work on vulnerability. After that I offer some ways to combat stigma of children in poverty and disability. It is upon this that I construct an alternative political vision that would value human need and be responsive to vulnerabilities without erasing or assimilating difference. (shrink)

Because people with disabilities live in a world not built for them, they are often the first to experiment with new technologies and are often expert in making choices about when to use them. People with disabilities face the question that all human beings increasingly face: to what extent will a given technology promote or thwart my flourishing? More generally, and at least as importantly, what does “flourishing” mean, and how can people use technologies to (...) promote it? To address those questions, we will build six public conversations around an activity that can be essential for flourishing: communicating, navigating, belonging, expressing, curing, and procreating. Each event will feature three persons who live with a disability or are the parents of someone who does. (shrink)

_Growing up with Parents who have Learning Difficulties_ uses a life-story approach to present new evidence about how children from such families manage the transition to adulthood, and about the longer-term outcomes of such an upbringing. It offers a view of parental competence as a social attribute rather than an individual skill, assessing the implications for institutional policies and practices. The authors address the notion of children having to parent their disabled parents and argue for a shift (...) in emphasis from protecting children to supporting families. This innovative book provides a fresh approach to a subject rife with prejudice and challenges us to think again about many taken-for-granted ideas about the process of parenting and the needs of children. It also demonstrates the power of narrative research and its capacity for bringing alive people's experience in a way that enables us to better understand their lives. (shrink)

This article examines how parents should make health decisions for one child when they may have a negative impact on the health interests or other interests of their siblings. The authors discuss three health decisions made by the parents of Alex Jones, a child with developmental disabilities with two older neurotypical siblings over the course of eight years. First, Alex’s parents must decide whether to conduct sequencing on his siblings to help determine if there (...) is a genetic cause for Alex’s developmental disabilities. Second, Alex’s parents must decide whether to move to another town to maximize the therapy options for Alex. Third, Alex’s parents must decide whether to authorize the collection of stem cells from Alex for a bone marrow transplant for his sibling who developed leukemia. We examine whether the consensus recommendations by Salter and colleagues (2023) regarding pediatric decision-making apply in families with more than one child. (shrink)

The birth of a child with hearing impairment imposes more parentaldemands than having a child without a disability. Parents have little concernabout the holistic growth and development of their children with hearingdisability. This study aspires to delineate the parental practice and experience indealing with behavioural problems of their children with hearing-impairmentsin a Special School in Kano State, Nigeria. This study employed a qualitativecase study design in which interviews and observation were used to collectthe data. Purposeful (...) sampling was utilised in selecting three fathers and threemothers of children with hearing impairment. Data was recorded, transcribedand thematically analysed in which categories were identified and generated.The findings accentuated several major themes and categories of parentalpractice and their experiences, which have to do with counselling the childrenwith hearing impairment. Parental experience includes the judgment of othersin the family and based on the findings, the researchers provide discernments toparents, their children with hearing impairment, and the immediate communitywhere such children live. (shrink)

This article argues that state laws banning abortions for disability violate reproductive justice for parents with disabilities. These bans deprive people with disabilities of choices that may be important to their possibilities of becoming parents, including possibilities for abortion of pregnancies that have become risky to continue. Far from protecting disability civil rights, these state law bans restrict the abilities of people with disabilities to choose to have children and to parent.

In lieu of an abstract, here is a brief excerpt of the content:IntroductionParenting Children with Autism Spectrum Disorders During the Transition to AdulthoodKelly Dineen and Margaret Bultas, Symposium EditorsThis issue of Narrative Inquiry in Bioethics is devoted to the personal stories of parents or guardians whose children with ASDs are transitioning or have transitioned to adulthood. The same parents who navigated the educational and health systems with little support twenty years ago once again find themselves (...) as pioneers in somewhat unchartered territory. Transition to adulthood, again, presents new terrain without well–defined parameters or reliable expectations for individuals with ASD and the parents who support them. At current, very little has been studied or written about the unique perspectives of parents during transition. What does exist suggests that parents of individuals with autism perceive their experiences as novel, even as compared with parents of children with other kinds of disabilities (Woodgate, Ateach, & Secco, 2008).One in 88 children is estimated to have an autism spectrum disorder (ASD) in 2012, a 78% increase since 2007 (Centers for Disease Control and Prevention, 2012). Although a variety of factors are certainly involved, the rate of diagnosis of individuals with ASDs has increased dramatically over the last twenty years and by all accounts the level and quality of support in health and social systems have lagged behind.While support and interventions have progressed significantly over time, attention on older populations has played a secondary role to early interventions. The proliferation of young people with ASD has outpaced supportive efforts at all levels. ASDs are usually diagnosed in childhood and funding for and access to research and interventions for children have resulted from, in no small part, the zealous efforts of parents. As this growing population of individuals with ASDs transitions to adulthood, finding appropriate supports and interventions have proven more elusive and more complicated. The hallmark symptoms of ASDs include social skill deficits and communication and behavioral difficulties—all traits that especially strain typical teenage and young adult relationships. Recent research backs up these difficulties and indicates that individuals with ASDs fare relatively poorly in traditional measures of independence such as employment, education and social relationships. Parents like the authors in this symposium continue to work to help their teenage and adult children navigate the demands, challenges and rewards of adulthood and independence with all its uncertainties and surprises.The editors of this issue of Narrative Inquiry in Bioethics solicited the personal stories of the parents who have navigated this transition. The call for stories was distributed to autism awareness groups, autism list–serves, bloggers, and social media outlets. Personal appeals to thought leaders and advocacy groups to distribute the call for stories also produced a number of responses. The [End Page 147] people and organizations that passed along our request and responded are too numerous to list here but our gratitude is sincere: their help made this issue possible.We hope the stories will give readers a sense of what parents find rewarding as well as especially challenging during this time and what actions and supports make a difference for the better. Stories about any aspect of the transition were welcome, ranging from navigating the health system to issues surrounding romantic relationships. We welcomed parents’ thoughts on any topic, including gender, level of function, provider behavior, stigma, friendship, services (existing or needed), decision making, independent living, co–morbidities, expectations, work, school or relationships.These topics and more emerged. Stories primarily came from mothers; however one father and one uncle also contributed. Consistent with diagnostic trends, most tell stories of parenting young men. The 12 stories that were selected for this edition represent just a fraction of the diverse set of issues, needs and commonalities of this growing population of adults. We received more stories than we could put in print. Twelve were selected to represent a range of experiences. Many other stories were so powerful that they will appear on–line in the Project MUSE edition of the journal.Commentators also represent a diverse group of professionals whose work includes direct care and support of individuals with ASD and their families, education, research, scholarship and advocacy. Some of our commentators also have a child or a loved one with ASD.Patricia Bashe... (shrink)

Many mothers with intellectual disabilities lose their parental rights due to child welfare (CW) concerns. Despite the growing interdisciplinary scholarship on parenting with intellectual disabilities, there is scant research that has explored the discursive practices embedded within CW or family courts involving mothers with intellectual disabilities. The aim of this study is to explore portrayals of mothering with intellectual disability in CW court reports filed in Québec, Canada. A three-level critical discourse analysis was (...) performed, focusing on 10 reports that were retrieved from a publicly available legal database, and their larger discursive societal context. Analysis highlighted unequal power relations as discursive practice underpinned by the following discursive patterns: (1) The ideal caregiver vs the unfit mother (2) Devalued voices of mothers with intellectual disability (3) Professionals as holding authoritative knowledge and (4) Decision-making based on the best interest of the child. Revealing the hidden ideological assumptions embedded in discourse can help to challenge and confront injustice faced by mothers with intellectual disability within the CW system. (shrink)

Progress in genetic and reproductive technology now offers us the possibility of choosing what kinds of children we do and don't have. Should we welcome this power, or should we fear its implications? There is no ethical question more urgent than this: we may be at a turning-point in the history of humanity. The renowned moral philosopher and best-selling author Jonathan Glover shows us how we might try to answer this question, and other provoking and disturbing questions to which it (...) leads. Surely parents owe it to their children to give them the best life they can? Increasingly we are able to reduce the number of babies born with disabilities and disorders. But there is a powerful new challenge to conventional thinking about the desirability of doing so: this comes from the voices of those who have these conditions. They call into question the very definition of disability. How do we justify trying to avoid bringing people like them into being? In 2002 a deaf couple used sperm donated by a friend with hereditary deafness to have a deaf baby: they took the view that deafness is not a disability, but a difference. Starting with the issues raised by this case, Jonathan Glover examines the emotive idea of 'eugenics', and the ethics of attempting to enhance people, for non-medical reasons, by means of genetic choices. Should parents be free, not only to have children free from disabilities, but to choose, for instance, the colour of their eyes or hair? This is no longer a distant prospect, but an existing power which we cannot wish away. What impact will such interventions have, both on the individuals concerned and on society as a whole? Should we try to make general improvements to the genetic make-up of human beings? Is there a central core of human nature with which we must not interfere? This beautifully clear book is written for anyone who cares about the rights and wrongs of parents' choices for their children, anyone who is concerned about our human future. Glover handles these uncomfortable questions in a controversial but always humane and sympathetic manner. (shrink)

The article addresses the problem of disability in the context of reproductive decisions based on genetic information. It poses the question of whether selective procreation should be considered as a moral obligation of prospective parents. To answer this question, a number of different ethical approaches to the problem are presented and critically analysed: the utilitarian; Julian Savulescu's principle of procreative beneficence; the rights-based. The main thesis of the article is that these approaches fail to provide any appealing principles on (...) which reproductive decisions should be based. They constitute failures of imagination which may result in counter-intuitive moral judgments about both life with disability and genetic selection. A full appreciation of the ethical significance of recognition in procreative decisions leads to a more nuanced and morally satisfying view than other leading alternatives presented in the article. (shrink)

Some parents have taken steps to ensure that they have deaf children, a choice that contrasts with the interest that other parents have in enhancing the traits of their children. Julian Savulescu has argued that, morally speaking, parents have a duty to use assisted reproductive technologies to give their children the best opportunity of the best life. This view extends beyond that which is actually required of parents, which is only that they give children reasonable (...) opportunities to form and act on a conception of a life that is good for them. Does the selection of deaf children violate that responsibility? Morally speaking, parents should refrain from using assisted reproductive treatments or prenatal interventions in order to have a child with a disability. Deafness and other disabilities represent intrinsic disadvantages that cannot be offset by other advantages that families and society can offer to people. By the same token, neither should parents seek enhancements of intelligence or physical traits that would undercut intrinsic goods of human life in similar ways. These moral arguments do not, however, sustain the judgment that the law should necessarily interfere with parents' decisions in these matters, even if those choices are morally unwise. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Resilience and the Narratives of Parents of Adults with Autism Spectrum DisordersNabil Hassan El-GhorouryThe prevalence of autism spectrum disorders (ASDs) is on the rise; the most recent report from the Autism and Developmental Disabilities Monitoring Network (2012) indicated a prevalence of ASDs of one in 88 children. This was a 78% increase from reported prevalence rates in 2002, when the rate was one in 150. Major (...) health organizations have been emphasizing the importance of early identification (Johnson, Myers, & Council on Children with Disabilities, 2007) to increase access to early intervention services, which are most effective when implemented before age three (Rogers & Vismara, 2008).The bulk of autism research has been focused on children, particularly young children. Given the growing identification and prevalence of ASDs, there will be more and more adolescents and adults with ASDs in the near and long term future. This issue of Narrative Inquiries in Bioethics is important because of its focus on an underrepresented area in the literature. The constraints of current health care delivery systems do not allow for providers to spend significant amounts of time with their patients. Furthermore, hearing first person narratives can be valuable by informing health care professionals about the experiences that parents (and by extension, the individual with an ASD) have experienced.As a licensed clinical psychologist with over two decades of experience with children, adolescents, and adults with ASDs in a variety of settings, I have a professional perspective on autism. As the older brother of Omar, a 38–year–old adult male with autistic disorder, I also have a lifetime of personal experiences of autism. As long as I can remember, I have had a brother with autism. I hope this unique perspective as both a behavioral health care provider and a family member of an adult with an ASD allows me to comment on these narratives in a thoughtful manner.Seeing Beyond Autism: Multiple IdentitiesMany parents commented on how their child was more than just autism or Asperger’s; they reflected on the strengths, unique experiences, and perspectives of their child. The narratives are rich in their desire to see the whole being of their children. Anonymous One writes:Another thing, and I think every parent will agree with this—teachers, school staff, health care industry staff, doctors and every one that comes into contact with an ASD individual—take the time to get to know them. It may be difficult and some may appear non–caring and rude. You must overlook this and look to the person underneath. They are great people. They have been through stuff and it means so much to them. Like I said—parents, you know this. Please remember it when times get tough. [End Page 189]Mark Osteen wrote about his son Cameron as they were making the decision to place their son in a residential placement: “I felt proud. It was like he was being recruited for college. And I am just as proud of him, and love him just as much, as if he were. What I hate is talking only about his ‘disability.’ I hope they see his good qualities. How smart he is. How funny he is. How charming he is. How strong he is.”Understanding the multiple identities of individuals with ASDs is important for parents so that they are not solely focused on the autism diagnosis. The talents and skills of the young adults described are remarkable. Anonymous One’s son David became a computer engineer at 13, reportedly “he was the youngest person in the United States to do so at such a young age.” Lori Centineo’s son Nathaniel is a poet, a rock climber, and skilled at sailing. Virginia Clapp’s son Nathaniel is a “chess genius”, a talented juggler “with the ability to juggle seven balls, which he told me is ‘insanity in a nutshell’,” and an origami expert. David McDonald’s nephew grew from a teenager who spoke only 30 words to speaking thousands of words and ultimately becoming a world traveler. Anonymous Four’s son Sam is “practically an expert” in earth sciences.Seeing beyond the autism is not always easy. Given the serious challenges... (shrink)

I develop a model of love or care between children and their parents guided by experiences of parents, especially mothers, with disabilities. On this model, a caring relationship requires both parties to be aware of each other as a particular person and it requires reciprocity. This does not mean that children need to be able to articulate their interests, or that they need to be self-reflectively aware of their parents’ interests or personhood. Instead, parents (...) and children manifest their understanding of one another as unique, irreplaceable individuals, with identifiable needs and interests through their interactions with one another. (shrink)

Futile treatment. Do not resuscitate. These terms and the thoughts they evoke may be unfamiliar to families with ill children. Similarly, laws, such as the Americans with Disabilities Act or the Emergency Medical Treatment and Active Labor Act, are probably unfamiliar. Yet these terms and laws, and, more important, their implications, are part of a new world of health care into which more families are thrust—the world of wrenching and complicated decisions.Although the number of these situations is (...) increasing and even predictable, the infrastructure of support services for families dealing with these medical decisions for seriously ill children has not been adequately addressed or developed. Parents know that some children are born with or develop serious illnesses and die. Amid absorbing large amounts of new information and interpreting the parameters and implications of what they are learning about their child's condition, families are forced by circumstances to assess—and to act on—their most critical, and perhaps previously unexamined, values. (shrink)

Futile treatment. Do not resuscitate. These terms and the thoughts they evoke may be unfamiliar to families with ill children. Similarly, laws, such as the Americans with Disabilities Act or the Emergency Medical Treatment and Active Labor Act, are probably unfamiliar. Yet these terms and laws, and, more important, their implications, are part of a new world of health care into which more families are thrust—the world of wrenching and complicated decisions.Although the number of these situations is (...) increasing and even predictable, the infrastructure of support services for families dealing with these medical decisions for seriously ill children has not been adequately addressed or developed. Parents know that some children are born with or develop serious illnesses and die. Amid absorbing large amounts of new information and interpreting the parameters and implications of what they are learning about their child's condition, families are forced by circumstances to assess—and to act on—their most critical, and perhaps previously unexamined, values. (shrink)

This study investigated the effects of music therapy and pictorial illustration on the attention span of children with mild intellectual difficulties. A pre-test, post-test and control group quasi-experimental research design was used with a sample of children diagnosed with mild intellectual disability from three special schools in Ibadan, Nigeria. Fifty children were randomly selected and assigned to one of three groups: music therapy, pictorial illustration, or control. Twenty-four sessions of music therapy and pictorial illustration classes were held (...) with the experimental group only. The Moss Attention Rating Scale was used before and after the intervention to collect data on participants’ attention span. Analysis of Covariance indicated that there was a significant statistical difference between pre-test and post-test results of the two groups. The estimated marginal means of post-attention span by treatment indicated that pictorial illustration had the highest post-attention span score, followed by music therapy, while post-attention span score for the control group was the least. Based on the findings, it is recommended that teachers, caregivers, and parents of children with mild intellectual disability adopt pictorial illustration and music therapy as teaching strategies to enhance their attention span. (shrink)

Prenatal diagnosis challenges the issue of parental autonomy. Two ethical aspects of the parental decision making process with reference to PND have been taken into consideration: the duty to know and the right not to know. Whilst the first approach has been widely discussed in literature, the latter seems to be overlooked. In order to find good moral reasons supporting the right not to know, firstly the duty to know approach was critically analysed. Subsequently, the emphasis was put on (...) the unconditional parental love and the issue of child’s best interests as the features supporting parental right not to know. The clarification of what is good parenthood was presented as the best normative approach supporting the parental right not to know in case of PND. Apart from parental autonomy, raising the question of the right not to know is important in the debate about the place and role of people with disabilities in society. (shrink)

Much academic work (in philosophy, economics, law, etc.), as well as common sense, assumes that ill health reduces well-being. It is bad for a person to become sick, injured, disabled, etc. Empirical research, however, shows that people living with health problems report surprisingly high levels of well-being - in some cases as high as the self-reported well-being of healthy people. In this chapter, I explore the relationship between health and well-being. I argue that although we have good reason to (...) believe that health problems causing pain and death typically do reduce well-being, health problems that limit capabilities probably don't reduce well-being nearly as much as most people suppose. I then briefly explore the consequences of this conclusion for political philosophy and ethics. If many health problems don't significantly reduce well-being, why should governments go to great expense to prevent or treat them? Why should parents be obliged to ensure the health of their children? (shrink)

Suppose that you are soon to be a parent and you learn that there are some simple measures that you can take to make sure that your child will be healthy. In particular, suppose that by following the doctor’s advice, you can prevent your child from having a disability, you can make your child immune from a number of dangerous diseases and you can even enhance its future intelligence. All that is required for this to happen is that you (or (...) your partner) comply with lifestyle and dietary requirements. Do you and your partner have any moral reasons (or moral obligations) to follow the doctor’s advice? Would it make a difference if, instead of following some simple dietary requirements, you consented to genetic engineering to make sure that your child was free from disabilities, healthy and with above average intelligence? In this paper we develop a framework for dealing with these questions and we suggest some directions the answers might take. (shrink)

This paper discusses whether prospectiveparents ought to find out about their geneticconstitution for reproductive reasons. It isargued that ignoring genetic information can bein line with responsible parenthood or perhapseven recommendable. This is because parenthoodis essentially an unconditional project inwhich parents ought to commit themselves tonurturing any kind of child. Besides, thetraditional reasons offered for theunfortunateness of impairments and the tragicfate of families with disabled children are notconvincing. Other morally problematic outcomesof genetics, such as discrimination againstindividuals with (...) impairments, and limiting freeparental decision making, are alsoconsidered. (shrink)