Disabled Daughter Research Articles

Challenges Faced by Parents of Children With Speech Disorder in Koto Lamo

Parenting a child is difficult, but parenting disabled children is even more difficult. The complexity of a child's disability needs to be coupled with its complexity, frequently putting parental skills to the test. The experiences of three parents of children with speech disorders disabled children are examined in this study. A phenomenological framework and study strategy were adopted to collect data, including group discussions and individual interviews. The first participant in this study is J, who has a 17-year-old disabled son; the second is SY, who has a 4-year-old disabled son; and the last one is A, who has a 19-year-old disabled daughter. The researchers used content analysis in this study. Per review and member checks were used to improve credibility. The themes that emerged showed that parents had different experiences parenting their children with disabilities, as well as the need to provide parents with accurate information about their children's problems. It seemed clear that such parents would gain from counselling to help them cope with the problematic situations of raising a disabled kid. The author suggests that this study showed the challenges faced by parents who have speech disorders and disabled children, especially in Koto Lamo.

Community building in deprived communicative environments: supporting participation and belonging for children with special communicative needs

ABSTRACT This article discusses how children with intellectual disabilities and special communicative needs use Alternative and Augmentative Communication (AAC) and sign-to-speech. Community participation, playing and learning, depends on communication. Everyday school settings may represent phonocentric (verbal speech) communicative environments which creates barriers for participation and belonging for children who use AAC and sign-to-speech, leaving many of these children lonely, muted, and frustrated. In Norway, specialized kindergartens/school for sign language is phased out. A case study of two families, each with an intellectually disabled daughter who uses sign-to-speech and staff in kindergartens and schools, is used as a fulcrum for our discussion of communication as key to community building and community participation and friendship. Community work as a cross-professional approach can affect conditions for participation for these children. Suggestions for how community participation can be facilitated and pave ways for play and belonging for children with special communicative needs are presented.

Care in the context of disability: a tool for (in)dependence and (dis)empowerment

The aim of this study was to explore care in the context of disability as a tool to promote independence and empower disabled people. The study was based on the case of two women, Anna and Lena, who switched the roles of being either the cared-for or the one-caring. Data was collected with semi-structured interviews with the above mother and daughter. The participants discussed their experiences and feelings regarding the process of switching roles and taking responsibilities, the barriers to independence and autonomy, the implications of disability on the personal and family level, the process of adaptation to disability and their expectations for the future. It was found that switching roles had a twofold and oxymoron effect: on the one hand, a negative impact on the former one-caring’s self-esteem and level of dependence was observed and, on the other, a positive impact on the disabled daughter’s autonomy and independence occurred. Points of interest Providing care is a moral act, which involves the one-caring and the cared-for. Caring may generate power relations and mutual dependence. In the context of impairment, sometimes need for care may be unavoidable. For this reason, dependence of some disabled people on non-disabled others may be observed. In Cyprus, caring for disabled siblings is considered as a moral duty and a virtue of females. For this reason, some women may devote themselves to caring for disabled siblings to feel valued and worthy. Switching the roles between the one-caring and the cared-for may be beneficial for the latter, because becoming the one-caring may result to feeling independent, self-confident, and free from previous control. In contrast, becoming the cared-for was related to increased stress and difficulties to adapt to impairment, since the new role was interpreted as acceptance of being depended on others and thereby unwanted loss of power.

We Have Seen the Mutants-and They Are Us: Gifts and Burdens of a Genetic Diagnosis.

In this essay, I recount and examine my response to a genetic diagnosis of my disabled daughter. My daughter was forty-nine before the diagnosis came. All her disabilities were traceable to a de novo single gene variant on the PURA gene that was discovered only in 2014. I speak of the jolt and the recalibration that this discovery engendered, concluding that, while it seemed that everything had changed, nothing had changed. But my family did discover a community in which Sesha joins other PURA-perfect sons and daughters and where we as a family acquire a "horizontal identity" marked by a genetic variant.

How structuralism matters

How does structuralism matter? How does it still matter well past its heyday in anthropology and the other so-called “sciences of man?” In this lecture, which is one part intellectual memoir, one part lay of the land, with some autoethnography involving my disabled daughter thrown in at the end, I suggest that certain premises associated with structuralism are at the heart of anthropology’s most interesting new work.

Comments on the dilemma in the March issue: Questioning morals

In the dilemma discussed in the March issue of In Practice, a dairy client with a large herd asked you to bring out an equine booster on your upcoming visit....

Resilience in Old Age: A Conceptual Analysis

This case report highlights a case from an old-age home where majority of elderly were found to be depressed and hopeless, one 70 years old woman's distinct trait amazed the authors. Her life history revealed that she got married at the age of 15 and after 20 years, she delivered 1child with meningitis. Due to child disease, she had to frequently visit the hospital. When her daughter was 5 years old, her husband died and this event led her to be the only caregiver of disabled daughter. In-spite of financial instability, she didn't stop her child's treatment; but her daughter died at the age of 10. When she reached at late adulthood, she remarried and started to enjoy satisfactory relationship with her spouse. After spending 5 years, she got divorced and shifted to old age home. Even now, with the fact of increasing age and fronting adversity, she still hopes to remarry in-order to spend her end days happily. She is always observed to be positive, helpful, and self-motivated, indicating that she has developed resilience. This paper aims to examine the impact of resilience on mental health of an elderly. In this case, application of “resiliency framework for elderly” denotes the presence of protective factors and positive psychological outcomes such as positive adaptation, and emotional wellbeing. In conclusion, to strengthen positive psychology, healthcare professionals’ role is considered pertinent because resilience can impede at any time if it is not well supported.

Love: A Letter To Ashley's Father

Love: A Letter To Ashley's Father

The Horrific and the Exemplary: Public Stories and Education Reform in Late Socialist China

A certain kind of news story appears in the Chinese media every so often: a junior middle school student hung herself, a university student threw sulfuric acid at some zoo animals, a biotechnology student murdered his classmates. These media stories are extreme and sensational indeed. But they also do important cultural work. In the context of education reform in late socialist China, the collective interpretation of horror stories provides a moral arena in which truths about how to raise and educate children correctly are produced and naturalized. They constitute negative models, usually of “bad parenting,” in contrast to stories about children who, despite limitations or difficulties, manage to ascend to great heights thanks to “good parenting.” This article examines two well-known public stories that circulated in the early 2000s in relation to the reform movement known as suzhi jiaoyu gaige, which aims to cultivate well-rounded individuals with a spirit of innovation. The first story I will analyze concerns a teenager, an achieving student, who murdered his own mother. The second concerns a father, a factory worker, who transformed his disabled daughter into a genius child. While starkly opposite in content, one displaying errors to avoid, the other wisdom to emulate, I argue that these public stories provide the hinge on which education reform turns. Horror and exemplary stories provoke thought and make moral arguments for attending to the inner subjectivity of children, rendering the ideals of suzhi jiaoyu self-evident and common sense.

But it’s not all about the sex: mothering, normalisation and young learning disabled people

This paper is about mothering, young learning disabled people, their sexualised and relationship lives and normalisation – not through the lens of the disabled person, but via a mothers perspective and theoretical discussion. As a mother who has a learning disabled daughter, a feminist and an academic my own mothering experience, my Ph.D. research and social theory are woven throughout this paper with the intention of opening up debate about sex, intimacy and normalisation, and how these impact upon young learning disabled people. I suggest that the relationship between sex, reproduction, intimacy and intellectual impairment and a project to decipher what it means to be human in all its dirty glory are also part of the discourse that needs to be discussed experientially and theoretically. So much so that the messy world within which we all live can be variously and differently constructed.

Third-party grooming in a captive chimpanzee group

Social grooming is ubiquitous among the captive chimpanzees at Chester Zoo. Seven individuals were chosen here for a study of third-party social dynamics. The grooming decisions of five adult males were analysed, but only insofar as they directed attention to a mother-daughter pair. Uniquely, the daughter was an unpopular and physically disabled subadult whose congenital motor impairments prevented her from grooming others effectively. The impetus for this study was the observation that some males increased their grooming towards the disabled daughter during days when the mother had a tumescent anogenital swelling (sexually attractive to males) compared to days when the mother was not tumescent (less attractive). Apparently, males were grooming the daughter with no possibility of payback (because the daughter could never "return the favour"). A "grooming rate" (avg. grooming time/hour) was calculated that showed the grooming efforts of all five males towards both mother and daughter. These rates were compared on days when (1) the mother's anogenital swelling was tumescent, and (2) days when the swelling was not tumescent. Each male showed a different pattern of behaviour. Two males groomed the daughter significantly more when the mother was tumescent. Results for all males were graphed against the quality of the social relationship between each male and the mother. Apparently, only males that had a weaker relationship to the mother groomed the daughter more when the mother was tumescent. This pattern did not exist for males with a stronger relationship to the mother. Possibly, the insecure males were using the disabled daughter as a way to curry favour with the attractive mother. If this is confirmed, then this type of triadic situation is a possible setting for indirect reciprocity to occur.

Enclave services: an office with a purpose.

Enclave services: an office with a purpose.

Book ReviewLove's Labor: Essays on Women, Equality and Dependency. By Eva Feder Kittay. New York and London: Routledge, 1999.Relational Autonomy: Feminist Perspectives on Autonomy, Agency, and the Social Self. Edited by Catriona Mackenzie and Natalie Stoljar. New York and Oxford: Oxford University Press, 2000.

F eminist philosophers are slowly moving beyond criticism of existing philosophical frameworks toward revised concepts. The two books under review take up the basic concepts of equality and autonomy and offer us glimpses of what future philosophy might be. Eva Feder Kittay tells us in Love’s Labor: Essays on Women, Equality and Dependency that she began with the hope that she could “formulate a new theory of equality that embraces dependency” but discovered that “there was too much work to be done in simply clearing the ground” (xii). After a review of existing feminist critiques of equality, Kittay arrives at an alternative conception of equality by offering a new and transformative feminist critique of John Rawls, arguably the most important contemporary liberal political philosopher. Kittay starts from a simple question: What place exists in Rawlsian society for someone like her own intellectually disabled daughter (described in a moving portion of the text)? By Rawls’s account, the requirement for free and equal people is that they be, as Kittay emphasizes, “self-originating sources of valid claims” and “self-authenticating sources of valid claims” (93). Kittay acknowledges that a Rawlsian just society would care for the disabled. The problem arises, though, because someone has to be a dependency worker in order for such a “charge” to be well cared for. Kittay then shows systematically how dependency workers, given the ways that their lives are bound up with the lives of their charges, cannot be selforiginating and self-authenticating in Rawls’s senses. Instead, she argues,

Loves Labor Revisited

Love's Labor explores the relations that dependency work fosters between women and between men and women, and argues that dependency is not exceptional but integral to human life. The commentaries point to more facets of dependency such as the importance (and limitation) of personal narrative in philosophizing dependency (Ruddick); the role of spirituality that Gottlieb addresses with regard to his disabled daughter; and the application of the theory to the situation of elderly women (Tong).

Hoge Raad, 21.2.1997 (Wrongful Birth)

In the Dutch case, a physician, at the occasion of a surgery, had removed a contraceptive implant and, without advising his patient, had not replaced it. In the first case before the BVerfG, a failed sterilization procedure was carried out by a medical doctor, who had been family planning counselor to the husband of plaintiff, and was followed by a pregnancy; again, the doctor had neglected to inform his patient of the failure. In both these cases, the 'resulting' child turned out to be 'normal' and healthy. This was different in the second German case. The parents of a disabled daughter, fearing a genetic predisposition, had chosen to undergo a medical examination in a specialized institution in order to find out whether indeed such a condition existed and could lead to the re-occurrence of the same disabilities should they have another child. They were assured, in a written document, that a genetically transmissible defect was very unlikely, and that therefore no reason existed to avoid a subsequent pregnancy. Nonetheless, the second daughter of the couple was born with the same disabilities as their first child. The Hoge Raad and the Erster Senat accept a claim for damages, the Zweiter Senat rejects it.