The aim of this study was to generate knowledge about how parents who have been part of an ethical decision-making process concerning a son or daughter in a neonatal unit experience life with a severely disabled child. A descriptive study design was chosen using 30 hours of field observations and seven in-depth interviews, carried out over a period of five months with parents who had been faced with ethical decisions concerning their own children in a neonatal unit. Strauss (...) and Glaser’s constant comparative method was used for the analysis. The findings seem to indicate that these parents have an extremely tough life. Their relationships with their children are somewhat ambivalent. The children are very dependent on their parents, who in some ways both love and hate them. Too little rest and sleep and feeding the children are the most serious problems. The parents require respite facilities. The home can seem like a prison, from which it is impossible to escape. It is like having a baby who never grows up. (shrink)

In a recent case, parents of a profoundly developmentally disabled child asked physicians to use high-dose oestrogen to inhibit the growth of their child in the interests of allowing better care of her as she ages. The physicians asked whether such an intervention would be ethically acceptable. Such an intervention would seem to violate the rights of the child to bodily integrity and to normal growth, making the intervention ethically objectionable. But in this paper, I argue (...) that in some rare instances, a developmentally disabled child may have only a minimal right against interference with her growth. In those instances, parents may be acting ethically if they use medical interventions to inhibit the growth of their child for the purposes of facilitating better care. But they may so intervene only when the child's disabilities are so profound that the child has no personal interest in developing an adult size and when the intervention is the least intrusive means available for facilitating the care of the child. (shrink)

It is sometimes argued that medical professionals should protect a future child's rights by prohibiting disabled parents from using technology to deliberately have a disabled child because disability is taken as an inevitable, severe threat to a child's otherwise “open” future. I will first argue that the open future that allegedly protects a child's future autonomy is precluded by the very conditions needed to develop that future autonomy. Any child's future will be narrowed (...) as they are socialized in a way that gives them the capacity for autonomous choice. However, oppressive master narratives can diminish a future child's autonomy by distorting their narrative identity and constricting their agency. In fact, the open future argument does just this by advancing one of the most damaging master narratives about disability: that disability inevitably and severely restricts a person's autonomy and closes their future. (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)

The central issues raised in much of feminist literary theory's early scholarship remain prescient: how does narrative engage with the social‐historical? In what ways does it codify existing structures? How does it resist them? Whose stories are not being told, or read? In this article I use Doris Lessing's novel The Fifth Child (1988) as a text with which to begin to address the above questions by reading with attention to the mother story but also the ‘other’ stories operating (...) both within and outside of the novel; in particular I am concerned with the convergence of maternity, disability and narrative. The novel's co-implication of sexual difference and corporeal difference reveals the ways in which the mother's story is both made possible and authorized by the disabled body of her child, and by his inability to tell his own story. Yet, if The Fifth Child is a horror story that uses the disabled child's body as its ground, it is also about the horror of maternity, in its conception and attendant choices. In this fictional story as well as in the social‐historical narrative circulating at the time of its publication in the late 1980s, both child and mother are indicted in their otherness and it is ultimately impossible to separate one from the other. (shrink)

The Child Abuse Amendments of 1984 established the norms for treating disabled newborns, but they did not address the treatment of premature babies. Parents and physicians need a framework for decisionmaking. A decision handed down recently by the Texas Supreme Court is a step forward.

BackgroundBreaking bad news to mothers whose children has disability is an important role of physicians. There has been considerable speculation about the inevitability of parental dissatisfaction with how they are informed of their child’s disability. Egyptian mothers’ preferences for how to be told the bad news about their child’s disability has not been investigated adequately. The objective of this study was to elicit Egyptian mothers’ preferences for how to be told the bad news about their child’s disability.MethodsMothers (...) of 100 infants recently diagnosed with Down syndrome were interviewed regarding their preferences for how to be told bad news. Mothers were recruited through outpatient clinics of the Pediatric Genetics Department at Fayoum University Hospital (located 90 km southwest of Cairo, Egypt) from January to June 2011.Results and discussionQuestionnaire analyses revealed nine themes of parental preferences for how to be told information difficult to hear. Mothers affirmed previously reported recommendations for conveying bad medical news to parents, including being told early, being told of others with a similar condition, and being informed of the prognosis.ConclusionsMothers affirmed communication themes previously discussed in the literature, such as being told early, and being informed of the prognosis. Although more research is needed in this important area, we hope that our findings will stimulate future search and help health care providers in different societies establish guidelines for effectively communicating bad news. (shrink)

: This paper examines ethical issues related to medical practices with children and adults who are members of a linguistic and cultural minority known as the DEAF-WORLD. Members of that culture characteristically have hearing parents and are treated by hearing professionals whose values, particularly concerning language, speech, and hearing, are typically quite different from their own. That disparity has long fueled a debate on several ethical issues, most recently the merits of cochlear implant surgery for DEAF children. We explore whether (...) that surgery would be ethical if implants could deliver close to normal hearing for most implanted children, thereby diminishing the ranks of the DEAF-WORLD. The ethical implications of eugenic practices with the DEAF are explored, as are ethical quandaries in parental surrogacy for DEAF children, and their parallels in transracial adoption. (shrink)

Con el objetivo de diseqar una propuesta de modificacisn al programa de la formacisn de enfermeros y sugerir la inclusisn de temas sobre la discapacidad infantil, que permitan instruir al personal en formacisn, se realizs un estudio descriptivo cualitativo, en dos etapas, en la primera, mediante entrevistas se recogis la opinisn del claustro de profesores de la Licenciatura en Enfermerma de la Universidad de Ciencias Midicas de Camag|ey, en una segunda etapa se aplics el mitodo de Panel de Expertos, en (...) el que participaron diez expertos seleccionados de manera intencional a partir de su prestigio, experiencia y vinculacisn a la docencia, en lo referido al tema. Se analizaron los programas rectores de la carrera de formacisn en Enfermerma. El analisis de los mismos permitis apreciar aspectos tan importantes como el trabajo con la familia del discapacitado, o los procedimientos propios del manejo en el domicilio del discapacitado, los cuales no son objeto de estudio en la carrera. Se diseqs una estrategia curricular teniendo en cuenta los objetivos pedagsgicos a cumplimentar con las modificaciones propuestas. Se impone la necesidad de incluir en los programas de estudios aspectos relacionados con esta compleja tematica. Constituye un reto entonces para la universidad continuar desarrollando estrategias que permitan el desarrollo del proceso docente educativo y garanticen calidad en el egresado. In order to design a modification proposal to the nurses training program and suggest the inclusion of topics on the child disability, enabling to instruct staff in training, a qualitative descriptive study was carried out in two stages. In the first stage, opinions through interviews to the staff of the Nursing Faculty of the University of Medical Sciences of Camag|ey were collected. In the second stage, the method of Experts Panel was applied. Ten experts were chosen intentionally taking into account their prestige, experience and links to teaching in regard to the subject. Guiding programs of the career of nursing training were analyzed. This analysis gave the possibility to appreciate important aspects, such as the work with the family of disabled children, and management procedures in their home, which are not the object of study in the career. A curricular strategy was designed taking into account the educational objectives to be fulfilled with the proposed modifications. It is necessary to include those aspects related to this complex subject in the programs. To continue developing strategies that allow improving the educational teaching process and ensuring the quality of graduated students represents a challenge to the University. (shrink)

Ableist attitudes and structures regarding disability are increasingly recognized across all sectors of healthcare delivery. After Dobbs, novel questions arose in the USA concerning how to protect reproductive autonomy while avoiding discrimination against and devaluation of disabled persons. As a case study, we examine the Louisiana’s Department of Public Health August 1st Emergency Declaration, “List of Conditions that shall deem an Unborn Child ‘Medically Futile.’” We raise a number of medical, ethical, and public health concerns that lead us (...) to argue the declaration should be rescinded. The ethically objectionable declaration provides valuable lessons concerning how to uphold both reproductive and disability justice in a post-Dobbs landscape. (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)

From growth attenuation therapy for severely developmentally disabled children to the post-natal management of infants with trisomy 13 and 18, pediatric treatment decisions regularly involve assessments of the probability and severity of a child’s disability. Because these decisions are almost always made by surrogate decision-makers and because these decision-makers must often make decisions based on both prognostic guesses and potentially biased quality of life judgments, they are among the most ethically complex in pediatric care. As the introduction to (...) HEC Forum’s special thematic issue on Childhood and Disability, this article orients the reader to the history of bioethics’ relationship to both pediatric ethics and disability studies and introduces the issue’s five manuscripts. As clinicians, disability scholars, philosophers and clinical ethicists writing on various aspects of pediatric disability, the articles’ authors all invite readers to dig beneath an overly-simplified version of what disability might mean to children and families and instead embrace a posture of genuine humility, recognizing both the limits and harms of traditional medical and bioethical responses to the disabled child. (shrink)

BackgroundBreaking bad news to mothers whose children has disability is an important role of physicians. There has been considerable speculation about the inevitability of parental dissatisfaction with how they are informed of their child’s disability. Egyptian mothers’ preferences for how to be told the bad news about their child’s disability has not been investigated adequately. The objective of this study was to elicit Egyptian mothers’ preferences for how to be told the bad news about their child’s disability.MethodsMothers (...) of 100 infants recently diagnosed with Down syndrome were interviewed regarding their preferences for how to be told bad news. Mothers were recruited through outpatient clinics of the Pediatric Genetics Department at Fayoum University Hospital (located 90 km southwest of Cairo, Egypt) from January to June 2011.Results and discussionQuestionnaire analyses revealed nine themes of parental preferences for how to be told information difficult to hear. Mothers affirmed previously reported recommendations for conveying bad medical news to parents, including being told early, being told of others with a similar condition, and being informed of the prognosis.ConclusionsMothers affirmed communication themes previously discussed in the literature, such as being told early, and being informed of the prognosis. Although more research is needed in this important area, we hope that our findings will stimulate future search and help health care providers in different societies establish guidelines for effectively communicating bad news. (shrink)

Both Heidegger's Being and Time and Helen Keller's The Story of my Life address the problem of what it means for humans to be optimally human. In reading these texts together, I hope to show that Helen's life-story confirms Heidegger's existential analyses to some extent, but also, importantly, poses a challenge to them with respect to the interrelated issues of disability, language and others. Heidegger's hermeneutic explication of what it means to be human is intended to uncover supposedly basic human (...) existential structures. As a fore-structure for this explication, Heidegger projects an already able-bodied, self-sufficient adult, resolutely engaged in daily activity. I shall argue, however, that it is due to this starting-point in adult-Dasein that Heidegger's existential analyses miss important insights concerning the meaning of being human to be gained from Helen's experience. Starting from the essentially disabled child-Dasein, Helen describes her struggle to achieve the very condition that Heidegger assumes from the start, first through rescue by the other as teacher, who offered the gift of language and community, and thereafter in her grasp of language as a “pharmakon.” I hope to show in the end that Helen's experience of a struggle for humanity offers the model for an alternative projection, that of an essentially disabled and needy Dasein, which, I believe, provides a more viable fore-structure than Heidegger's for a hermeneutics of humanity. S. Afr. J. Philos. Vol.22(1) 2003: 98-112. (shrink)

Depression is the principal cause of illness and disability in the world. Studies charting the prevalence of depression among children and adolescents report high percentages of youngsters in both groups with depressive symptoms. This review analyzes the construct and explanatory theories of depression and offers a succinct overview of the main evaluation instruments used to measure this disorder in children and adolescents, as well as the prevention programs developed for the school environment and the different types of clinical treatment provided. (...) The analysis reveals that in mental classifications, the child depression construct is no different from the adult one, and that multiple explanatory theories must be taken into account in order to arrive at a full understanding of depression. Consequently, both treatment and prevention should also be multifactorial in nature. Although universal programs may be more appropriate due to their broad scope of application, the results are inconclusive and fail to demonstrate any solid long-term efficacy. In conclusion, we can state that: (1) There are biological factors (such as tryptophan—a building block for serotonin-depletion, for example) which strongly influence the appearance of depressive disorders; (2) Currently, negative interpersonal relations and relations with one's environment, coupled with social-cultural changes, may explain the increase observed in the prevalence of depression; (3) Many instruments can be used to evaluate depression, but it is necessary to continue to adapt tests for diagnosing the condition at an early age; (4) Prevention programs should be developed for and implemented at an early age; and (5) The majority of treatments are becoming increasingly rigorous and effective. Given that initial manifestations of depression may occur from a very early age, further and more in-depth research is required into the biological, psychological and social factors that, in an interrelated manner, may explain the appearance, development and treatment of depression. (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 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)

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)

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, 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)

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)

Robert Veatch’s The Foundations of Justice: Why the Retarded and the Rest of Us Have Claims to Equality delves into deep questions of justice through the case of a child with disabilities. I describe what is basically right about this vision, as well as what is problematic from the standpoint of contemporary disability bioethics. From there, I dive into the notion of vulnerability that is at play in his work. He describes disability as necessarily a condition of weakness, lesser-than (...) existence, and neediness. When disability is viewed in this way as an inherently vulnerable state of being, the essential sociopolitical dimensions of disability receive inadequate attention, which, in turn, makes it impossible to identify injustices correctly. I connect these points to concrete challenges faced by disability communities during the COVID-19 pandemic, which have raised profound questions about the just use of scarce critical care resources. Any case drawn from the pandemic is a very different kind of case than that of the child in Veatch’s book, but a commonality is the question of who should get what limited resources when needs and urgency vary. (shrink)

Sense of coherence and coping with stress in fathers of children with developmental disabilities** The aim of the study is to analyse the sense of coherence and strategies of coping with stress in fathers of disabled children. The research involved 128 fathers of children with Down syndrome, autism, cerebral palsy and children with normal development. Two questionnaires were used: The Sense of Coherence Questionnaire measuring SOC level and Ways of Coping Questionnaire measuring strategies of coping with stress. The research (...) revealed that there is a relationship between the type of child's developmental disability and SOC in fathers. The fathers with a low level of SOC more frequently used strategies of avoidance while the fathers with a high level of SOC more frequently used confrontation, positive reappraisal and planful problem solving. The results of the research indicate that looking after a disabled child may lower SOC and in turn may cause difficulties in coping with stress. (shrink)

Neither secular moral theory nor religious ethics have had much place for persons in need of constant physical help and cognitive support, nor for those who provide care for them. Writing as the father of a fourteen-year-old daughter with multiple disabilities, I will explore some of moral issues that arise here, both from the point of view of the disabled child and from that of the child's caretaker(s).

Death and grief in the ancient world -- Predictions and disability in Rome.

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)

Although deeply committed to the model of nondirective counseling, most genetic counselors enter the profession with certain assumptions about health and disability—for example, that it is preferable to be a hearing person than a deaf person. Thus, most genetic counselors are deeply troubled when parents with certain disabilities ask for assistance in having a child who shares their disability. This ethical challenge benefits little from viewing it as a conflict between beneficence and autonomy. The challenge is better recast as (...) a conflict between parental autonomy and the child's future autonomy. (shrink)

Thomas Murray's graceful and humane book illuminates one of the most morally complex areas of everyday life: the relationship between parents and children. What do children mean to their parents, and how far do parental obligations go? What, from the beginning of life to its end, is the worth of a child? Ethicist Murray leaves the rarefied air of abstract moral philosophy in order to reflect on the moral perplexities of ordinary life and ordinary people. Observing that abstract moral (...) terms such as altruism and selfishness can be buried in the everyday doings of families, he maintains that ethical theory needs a richer description than it now has of the moral life of parents and children. How far should adults go in their quest for children? What options are available to women who do not want to bear a child now? Should couples be allowed to reject a child because of genetic disability or "wrong" gender? How can we weigh the competing claims of the genetic and the rearing parents to a particular child? _The Worth of a Child_ couples impressive learning with a conversational style. Only by getting down to cases, Murray insists, can we reach moral conclusions that are unsentimental, farsighted, and just. In an era of intense public and private acrimony about the place and meaning of "family values," his practical wisdom about extraordinary difficult moral issues offers compelling reading for both experienced and prospective parents, as well as for ethicists, social and behavioral scientists, and legal theorists. (shrink)

Pre-natal-diagnosis technologies allow parents to discover whether their child is likely to suffer from serious disability. One argument for state funding of access to such technologies is that doing so would be “cost-effective”, in the sense that the expected financial costs of such a programme would be outweighed by expected “benefits”, stemming from the births of fewer children with serious disabilities. This argument is extremely controversial. This paper argues that the argument may not be as unacceptable as is often (...) assumed. In doing so, it sets out a more general framework for assessing the relevance of efficiency calculations to policy-making. The final section also investigates the relationship between the paper’s arguments and claims about parental responsibility for child-bearing and rearing, with reference to Scanlon’s work on “substantive responsibility”. (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)

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)

"In these essays, health care professionals, scholars, and members of the disability community debate the implications of prenatal testing for people with disabilitties and for parent-child relationships generally."--Cover.

Prenatal screening can significantly benefit parents and the community. However, it has created a dilemma for women as it requires them to quickly decide whether to continue a pregnancy or terminate it should the test indicate a foetal abnormality. This can be psychologically traumatic for women torn between their connection to an unborn child with all its possible imperfections, and a desire to prevent its suffering as a disabled child in later life. A woman must also consider (...) her own and her family's future welfare. Extensive research into the physical aspects of prenatal screening has not explored the meaning of the experience for women or whether termination is the most appropriate option. This article examines recent qualitative studies, concluding that women who terminate a pregnancy following prenatal screening may experience an acute grief reaction or be plagued by guilt and fear that can precipitate marital breakdown. Additionally, there is a risk that through striving to eradicate congenital disability, a community risks promoting a cult of perfectionism that may have discriminatory effects on disabled people. (shrink)

Continuing tensions exist between mainstream bioethics and advocates of the disability rights movement. This paper explores some of the grounds for those tensions as exemplified in From Chance to Choice: Genetics and Justice by Allen Buchanan and coauthors, a book by four prominent bioethicists that is critical of the disability rights movement. One set of factors involves the nature of disability and impairment. A second set involves presumptions regarding social values, including the importance of intelligence in relation to other human (...) characteristics, competition as the basis of social organization, and the nature of the parent–child relationship. The authors’ disapproval of certain aspects of the disability rights movement can be seen to be associated with particular positions regarding these factors. Although the authors intend to use a method of ‘broad reflective equilibrium,’ we argue that their idiosyncratic commitment to particular concepts of disability and particular social values produces a narrowing of the moral significance of their conclusions regarding disability rights. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Philosophy, Psychiatry, & Psychology 10.1 (2003) 81-85 [Access article in PDF] "What's in the Box Then, Mum?"—Death, Disability, and Dogma Sheila Colman OVERHEARD IN AN EXCHANGE between a bereaved woman and her son outside the church just prior to a funeral service: "What's in the box, then?" "Daddy." The son is in his late 30s and has a learning disability. His mother had prepared him as well as she (...) could; his father had been ill for some time and was not expected to recover. Death, and the rituals surrounding it, had been explained and it was not the first family funeral he had attended.Trying to field such childlike questions is typical of living with a person with a learning disability; trying to find the right words is difficult enough without the added pressure of personal emotional distress.The generally accepted norm in life is that a child is parented within the home until adulthood and then independence is attained. Roles may well be reversed in later life in that the "child" may find responsibilities in caring for, and making decisions for, elderly parents. Few people can stop parenting when their offspring are fledged—even though it is at arms length and any advice may be ignored. Life with a child with a learning disability is unbalanced in this respect; as carers we do not lead lives considered to be normal because our children continue to be childlike for the rest of their, and our, lives. Some of us know that our sons and daughters do not have "apparently limitless potential... to develop skills and autonomy if only they are given the right help" (but try, as a parent or carer, saying that to a professional working in the field of learning disability!) and know that the best we can hope for is mature, rather than immature, dependence.No one tells parents of a learning disabled child—or any other, for that matter—what their responsibilities to that child are. Food, warmth, love, support, and so on are givens, but it takes a conscious effort to move a child toward adulthood when it involves changes in life, for example, moving away from the family home. The debate rages; is it letting go or getting rid of?We all delight in the pleasures our children experience in childhood; we know the magic has gone from the family Christmas once realisation dawns on the youngest child. If you consider that your son or daughter has been dealt a very poor hand in life, the temptation to prolong and promote that innocence is very tempting. It is much easier to prevaricate than to admit that life has its unpleasant sides; that failure and disappointment exist: my son was a great fan of Thomas the Tank engine videos until he was in his early teens, long after it was age appropriate. I passed them onto a younger child, having told him the videos were lost. The fall-out was spectacular [End Page 81] (but fortunately short lived!) and he eventually became very interested in Formula 1 motor racing. I had to push him to grow up.For all of us, the transition from childhood to adulthood is a process, not an event. Although I agree with the professionals that the child with a learning disability should be part of any discussions concerning his or her future, if that child does not have the intellectual capacity to make informed choices, someone else has to do it. That someone else is usually a parent, but is it a parent who is prepared to let go to help that person become an adult with his or her own life away from the family home, or is it a parent who has protected and coddled the child by promising they will never have to go?Lest you think I am a particularly hard, confrontational, and unfeeling mother, I would point out that I have almost 50 years of experience of living with learning disability in the immediate family; my son is 20 but my brother... (shrink)

As reproductive genetic technologies advance, families have more options to choose what sort of child they want to have. Using preimplantation genetic diagnosis (PGD), for example, allows parents to evaluate several existing embryos before selecting which to implant via in vitro fertilization (IVF). One of the traits PGD can identify is genetic deafness, and hearing embryos are now preferentially selected around the globe using this method. Importantly, some Deaf families desire a deaf child, and PGD–IVF is also an (...) option for them. Selection for genetic deafness, however, encounters widespread disapproval in the hearing community, including mainstream philosophy and bioethics. In this paper I apply Elizabeth Barnes’ value-neutral model of disability as mere-difference to the case of selecting for deafness. I draw on evidence from Deaf Studies and Disability Studies to build an understanding of deafness, the Deaf community, and the circumstances relevant to reproductive choices that may obtain for some Deaf families. Selection for deafness, with deafness understood as mere-difference and valued for its cultural identity, need not necessitate impermissible moral harms. I thus advocate that it is sometimes morally permissible to select for deafness in one’s child. (shrink)

In the intersection between eugenics past and present, disability has never been far beneath the surface. Perceived and ascribed disabilities of body and mind were one of the core sets of eugenics traits that provided the basis for institutionalized and sterilization on eugenic grounds for the first 75 years of the 20th-century. Since that time, the eugenic preoccupation with the character of future generations has seeped into what have become everyday practices in the realm of reproductive choice. As Marsha Saxton (...) (2000) and Adrienne Asch (2000, 2003) have forcefully argued, the use of prenatal screening technologies to facilitate the selective abortion of fetuses with features that signify disabling traits—the paradigm here being trisomy 21 in a fetus indicating Down Syndrome in the child—express a negative view of such disabilities sufficient to warrant terminating an otherwise wanted pregnancy. The eliminative structure of what Rosemary Garland Thompson (2012) has called eugenic logic persists in contemporary practices governing reproductive choice, social inclusion, and democratic participation and their relationship to disability. The tie between eugenics and contemporary disability studies suggests that eugenics and reflection on its history can also play a more positive role in disability politics. After focusing on eugenics in the first half of the paper, we will shift in the second half of the paper to eugenic resonances in contemporary thought and practice, concluding with some thoughts about ongoing practices of silencing and the very idea of eradicating disability. (shrink)

In this paper, I analyze the ethical implications of genetic enhancement within the specific framework of the “child’s right to an open future” argument (CROF). Whilst there is a broad ethical consensus that genetic modifications for eradicating diseases or disabilities are in line with – or do not violate – CROF, there is huge disagreement about how to ethically understand genetic enhancement. Here, I analyze this disagreement and I provide a revised formulation of the argument in the specific field (...) of genetic enhancement. First, I argue that CROF is not in contrast with every kind of enhancement. I subsequently discuss whether CROF requires some moral obligations to enhance progeny. My argument is that parents do not have the moral obligation to open as many options as possible for their children. Rather, they should provide them with a reasonable range of opportunities. Finally, I contend that the moral obligations required by CROF are directly dependent on what Allen Buchanan calls the ‘dominant cooperative framework’ in a given society. I conclude by claiming that, at present, parents are not morally obliged to genetically enhance their children since a non-enhanced person already might have access to a reasonable range of opportunities. However, the moral obligation to enhance progeny might arise if a structural modification of the dominant cooperative framework occurs. (shrink)

From the standpoint of disability advocacy, further exploration of the concept of well-being stands to be availing. The notion that “welfarism” about disability, which Julian Savulescu and Guy Kahane debuted, qualifies as helpful is encouraged by their claim that welfarism shares important commitments with that advocacy. As becomes clear when they apply their welfarist frame to procreative decisions, endorsing welfarism would, in fact, sharply undermine it. Savulescu and Kahane's Principle of Procreative Beneficence—which reflects transhumanism, or advocacy of radical bioenhancement—morally requires (...) parents to choose the child who will, in all probability, have “the best life.” Assuming the emergence of potent biotechnologies, procreative decision-making would be highly standardized, for prospective parents would be morally obliged to maximize select capacities, including intelligence, self-control, and hedonic set-point, in their children. Welfarism, applied to reproduction, is staunchly objectivist about what course is incumbent on decision-makers, giving no credence to first-personal values, aspirations, and experiences. Though this dismissal of individual perspectives applies to everyone, its implications for disability advocacy are especially severe. With that advocacy in view, greater attention to “well-being” should, therefore, be severed from the welfarism of Savulescu and Kahane. (shrink)

In recent years, there has been a growing emphasis on researching quality of life,particularly within families that include members with disabilities. Family Quality ofLife (FQOL) has gained prominence in special education as researchers seek to understandand improve the well-being of these families. This study aims to present findingson the quality of life of parents raising children with disabilities.Using a quantitative research approach and the validated BCFQOL tool, wesurveyed 205 parents. The results were unexpectedly positive, showing generally higherlevels of quality of (...) life among participants. However, challenges were identified in specificdimensions such as “Emotional well-being,” and “Material well-being”. (shrink)

If personhood involves the construction of a narrative identity, then what are we to say of someone who is seriously ill or disabled? How can her life have any narrative when she is unable to write one?

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)