Building Bridges: Integrating Disability Ethics Into Occupational Therapy Practice.

Throughout the course of their careers, occupational therapy practitioners will encounter many ethical dilemmas as a part of service provision to disabled people. This article illustrates how disability ethics can strengthen the application of the Occupational Therapy Code of Ethics in practice. To maintain the integrity of the occupational therapy profession, it is critical that practitioners integrate concepts of disability ethics into the profession so their practice will promote environments in which disabled people will flourish.

Influence of a support group for young women with disabilities on sense of belonging.

Women and girls with disabilities face obstacles to community participation and social acceptance. Consequently, as adolescent women with disabilities mature into adulthood, they may have difficulty feeling that they belong both in the general community and in the community of all women. The positive impact of peer support groups for young women with disabilities on their sense of belonging has been underinvestigated. We conducted in-depth, semistructured interviews with 9 members of a well-established empowerment support group for young women with disabilities to explore how the group might foster a sense of belonging to the general community as well as a sense of shared womanhood. Results revealed that self-confidence and disability pride stemming from participation in the group were essential in helping the women counteract exclusionary messages from the outside world. The group provided an opportunity to develop a positive disability identity and to gain new information regarding the ability and right to identify as women. Reciprocal bonds with other group members helped cultivate feelings of belonging. In turn, the women communicated their empowered identities and the disability rights information they learned in the group to their friends, family, and community members. The group offered the women various platforms to assert their right to belong and, therefore, to participate in the world as women and as independent members of their broader communities. These results show how peer support groups for young women with disabilities can positively influence their sense of belonging both within the group and in the world outside the group.

The characteristics of unsuccessful e-mentoring relationships for youth with disabilities.

Recently, researchers have focused on the benefits of e-mentoring for young people with disabilities, such as greater access to sources of information and support. Relatively few researchers have explored the problem of unsuccessful e-mentoring relationships, i.e., mentors and mentored individuals who withdraw from an e-mentoring program before completion. Our findings promote understanding of the dynamics of unsuccessful vs. successful e-mentoring relationships for youth with disabilities. Using qualitative methods, we focused primarily on negative online experiences. We compared the e-mentoring process of six "unsuccessful" pairs of mentors and mentored students who withdrew from an e-mentoring program with three exemplary "successful" pairs who fully completed the program. Our findings revealed different communication patterns in the two groups. Whereas the unsuccessful pairs used a more formal style and distant tone, the successful pairs used an informal and supportive style. We discuss these differences, including the components that are essential to success.

Exploring experiences of intimacy from the viewpoint of individuals with traumatic brain injury and their partners.

OBJECTIVE: To explore qualitatively the experience of intimacy from the viewpoint of persons with traumatic brain injury (TBI) and their intimate partners. DESIGN: Qualitative interview study. SETTING: Outpatient community. PARTICIPANTS: Eighteen persons with TBI and their intimate partners at a mean length of 4.78 years postinjury. MAIN MEASURES: Open-ended, semistructured, in-depth interviews regarding participants' experience of intimacy, factors impacting intimacy, and need for services. RESULTS: Factors that were perceived as helping relationships remain strong included unconditional commitment, spending time together, open communication, a strong preinjury relationship, bonding through surviving the injury together, social support, family bonds, spirituality, experience with overcoming hardship, and coping skills. Factors that were perceived as barriers to intimacy included injury-related changes, emotional reactions to changes, sexual difficulties, role conflict and strain, family issues, social isolation, and communication issues. CONCLUSIONS AND IMPLICATIONS: Education regarding the impact of TBI on intimacy should be integrated into rehabilitation. Health professionals should be sensitized as to the needs that persons with TBI and their partners have regarding intimacy and how to make appropriate referrals to assist them.

No, we don't think our doctors are out to get us: responding to the straw man distortions of disability rights arguments against assisted suicide.

The arguments that disability rights advocates present in opposition to legalized assisted suicide are frequently misconstrued in public debate. The goal of this paper is to identify and analyze key "straw man" fallacies about the disability rights opposition in order to clarify this position and the factors that contribute to its distortion. The author adopts a first-person perspective as a disability scholar/activist who has participated in "right to die" debates for over two decades. Three possible barriers that potentially impede comprehension of disability rights arguments are discussed. Prominent fallacies that assisted suicide proponents attribute to disability rights opponents are analyzed in relation to the dynamics of the assisted suicide debate, social views of disability and incurable illness, and available evidence. The author's position is that disability rights arguments against legalized assisted suicide contribute a complex intellectual and experience-based perspective to the debate that can illuminate immediate and distal consequences of altering public policy.

New voices in women's health: perceptions of women with intellectual and developmental disabilities.

This study explored aging and health experiences and concerns of women with intellectual and developmental disabilities, using a participatory approach that captured the direct reports of the women, in their own words and from their own perspectives. The results of a qualitative analysis of 6 focus groups, composed of 34 women with intellectual and developmental disabilities, Age 30 years and older are reported. The focus groups addressed health knowledge, body awareness,developmental and age-related changes, life satisfaction, health behaviors, health service experiences, and perceptions of disability. Findings indicated that the women held misconceptions and limited knowledge regarding health and aging. The results are discussed in relation to disability, women's health, and social support issues, including recommendations for health professionals and care providers.

The next exclusion debate: assessing technology, ethics, and intellectual disability after the Human Genome Project.

Recent scientific discoveries have made it much easier to test prenatally for various genetic disabilities, such as Down syndrome. However, while many observers have heralded such "advances" for their effectiveness in detecting certain conditions, others have argued that they perpetuate discrimination by preventing the birth of children with disabilities. This article examines the ethical and social implications of the Human Genome Project for individuals with intellectual disabilities and their families. It details the critique of prenatal testing articulated by many disability rights activists as well as scholarly and professional responses to that critique. A review of the pertinent research literature includes perspectives of genetic professionals, ethicists, disability studies scholars, parents of children with disabilities, and disabled individuals themselves. Finally, the article explores how future research endeavors, policies, and practices may more effectively integrate and respect the positions of these various stakeholders.

Health, preventive health care, and health care access among women with disabilities in the 1994-1995 National Health Interview Survey, Supplement on Disability.

OBJECTIVES: This study presents national estimates on the health, preventive health care, and health care access of adult women with disabilities. We compared women with 1 or 2 functional limitations (FLs) and > or =3 FLs with women with no FLs. Topics covered included demographic characteristics, selected reported health measures, selected clinical preventive services, and selected access to care indicators and health care coverage. METHODS: Estimates in this report were based on data from the 1994-1995 National Health Interview Survey, Supplement on Disability (NHIS-D). The sample size for women > or =18 years of age used in producing the estimates from the combined 1994 and 1995 NHIS-D was 77,762. RESULTS: An estimated 16% of women > or =18 years of age had difficulty with at least 1 FL. Women with FLs were less likely to rate their health as excellent or very good and more likely to report their health as fair or poor when compared with women with no FLs. Women with FLs were also more likely to report being a current smoker, having hypertension, being overweight, and experiencing mental health problems. Among women > or =65 years of age, those with FLs were also less likely to have received Pap smear tests within the past year and those with > or =3 FLs were less likely to have received mammograms within the past year than women with no FLs. Women with > or =3 FLs were more likely to report being unable to get general medical care, dental care, prescription medicines, or eyeglasses, regardless of age group, compared with women with no FLs. The main reasons reported for being unable to receive general care were financial problems or limitations in insurance. These findings suggest that increased attention to the health care needs of women with disabilities from researchers, clinicians, and public health professionals is warranted.

Depression in the context of disability and the "right to die".

Arguments in favor of legalized assisted suicide often center on issues of personal privacy and freedom of choice over one's body. Many disability advocates assert, however, that autonomy arguments neglect the complex sociopolitical determinants of despair for people with disabilities. Specifically, they argue that social approval of suicide for individuals with irreversible conditions is discriminatory and that relaxing restrictions on assisted suicide would jeopardize, not advance, the freedom of persons with disabilities to direct the lives they choose. This paper examines the idea promoted by some proponents of assisted suicide that it is reasonable to be depressed about one's diminished quality of life in cases of irreversible illness or disability and, therefore, such depression should not call into question the individual's competence to request assistance in dying. The concept of rational depression is defined and examined in the context of: four real-life cases involving individuals with disabilities who requested assistance in dying; a set of criteria commonly applied to decision-making to determine rationality; and research bearing on the emotional status of people with disabilities. It is concluded that although disability is associated with particular socially mediated stressors, there is no theoretical or empirical evidence to indicate that depression and its role in the "right to die" is dynamically different, more natural, or more reasonable for disabled people than for non-disabled people.

Attitudes of health care trainees about genetics and disability: issues of access, health care communication, and decision making.

Prior studies suggest that knowledge and attitudes of health care professionals influence patient communication and medical decision-making. To study this dynamic in the context of genetic disability, we developed a survey on health professionals' attitudes regarding disability and genetic screening and pilot-tested it on a sample of medical students, residents, and genetic counseling students (N=85). Despite minimal experience with disability or genetics, most respondents reported feeling comfortable dealing with genetics (59%) and disability (75%). The majority felt that disability caused significant suffering for both the person (51%) and family (64%), and that research should be directed toward preventing genetic disability (62%). Similar to prior literature, perceived "Quality of Life" was most often based on degrees of physical and cognitive functioning, pain, and social support. However, differences were found between genetic counseling trainees and other medical trainees in their relative emphasis of social versus medical issues in questions of disability and genetic testing, and these response patterns were associated with differences in the groups' priorities for offering information about social resources. Respondents agreed that access to genetic testing and information is personal and that testing should be available upon request for oneself (68%) and to a lesser degree for one's fetus (55%) or child (41%). However, the same individuals frequently stated that society should regulate access to such technologies. Although most felt that the patient and professional should jointly make such decisions on a case-by-case basis, it was also seen as appropriate for the health care professional to occasionally decline genetic testing. It seems appropriate that training and experience influence knowledge and attitudes. Therefore, it is critical to document knowledge and attitudes of various health care providers and trainees, including differences between various specialties, to improve educational interventions geared to this area.

Transforming psychological practice and society. Policies that reflect the new paradigm.

As people with disabilities challenge psychology to acknowledge the sociopolitical foundations of their marginalization, they urge psychologists to help improve disability policy within and beyond the borders of the discipline. Understanding disability through a social paradigm offers opportunities to reframe the way psychologists define problems related to disability, to develop more collaborative relationships between psychologists and people with disabilities, and to adopt new professional responsibilities with respect to the disability community. The authors address the impact of the social paradigm on policies within psychology that guide consulting, advocacy, and training. The impact of national policy decisions, such as those associated with reimbursement, on practice and training is also discussed. Highlighted throughout are points of controversy prompted by new disability frameworks that remain open to illumination from the field.

Women with developmental disabilities: health and aging.

Major shifts have occurred in the world of disability that have profound implications for health-service provision. Although health researchers and clinicians have begun to address the health needs of women with disabilities, representation of older women with intellectual disabilities in health research and health-care practice remains inadequate. As the visibility of this group continues to grow through policies that support greater community integration and longevity, they and their families, professionals, and advocates will require more information about their health concerns, and appropriate health services and options. This article provides an overview of major issues of women with developmental disabilities within the areas of primary health care, aging, access to health services, and future directions in research and practice.