Rethinking systemic ableism: A response to Zagouras, Ellick, and Aulisio.

Introduction: This article is a response to Zagouras, Ellick, and Aulisio who presented a case study justifying the questioning of the capacity and autonomy of a young woman with a physical disability who was pregnant and facing coercive pressure to terminate. Case description: Julia is described as a 26-year-old woman with a neurological disability that requires her to receive assistance with activities of daily living. She was described as living with her parents who provided her with personal care assistance. Julia became pregnant and her parents wished her to terminate because they did not want to care for her child in addition to her. In fact, Julia's parents threatened her with institutionalization if she did not elect to terminate the pregnancy. Her health care team questioned her decision-making capacity based on her alleged "mental age" and experiences of being sheltered and excluded. The health care team used directive tactics to convince Julia to terminate the pregnancy, which describe as both an ethical and feminist intervention. Discussion: The current authors take issue with the case analysis provided by and argue that they neglected to account for numerous instances of systemic ableism that adversely affected Julia, demonstrated prejudicial and judgmental attitudes toward pregnancy and disability, inappropriately questioned her decision-making capacity by infantilizing her, misconstrued the feminist concept of relational autonomy, and colluded with coercive interference from family members. This is a classic example of discriminatory and culturally incompetent reproductive health care for a disabled woman.

Advocacy: The seventh foundational principle and core competency of rehabilitation psychology.

PURPOSE/OBJECTIVE: Advocacy has received increasing attention in the field of psychology over the past few years, including in the subfield of rehabilitation psychology. Psychology has been criticized for over-focusing on individual responses to complex sociopolitical problems. Rehabilitation psychology has tended to do this in much the same way, by placing the onus on individual disabled persons' responses to disability and overlooking the systemic and structural concerns of the environment. Advocacy has a long and important history as a competency for the practice of Rehabilitation Psychology. Yet, rehabilitation psychologists rarely receive formal training or guidance about performing effective advocacy efforts. The original six Foundational Principles include the person-environment relation, the insider-outsider distinction, adjustment to disability, psychological assets, self-perception of bodily states, and human dignity. Beatrice Wright advised that the guiding principles must be subject to review and open to expansion. RESEARCH METHOD/DESIGN: N/A. RESULTS: N/A. CONCLUSIONS/IMPLICATIONS: These authors believe that advocacy should be officially adopted as the seventh foundational principle of Rehabilitation Psychology. Rather than define advocacy narrowly as efforts within individual patient or family contexts, we argue that advocacy should be a broad construct of work done alongside the disability community and follow the lead of those with lived experience to avoid unintended consequences of well-intentioned advocacy efforts. We share models of advocacy in the field of psychology, including those most pertinent to rehabilitation psychology. Current disability advocacy priorities are highlighted at the individual, institutional, and discipline levels including interfacing with policymakers. (PsycInfo Database Record (c) 2023 APA, all rights reserved).

The evolution of disability language: Choosing terms to describe disability.

The use of disability language in academic scholarship has changed significantly over the past several years. Although it would be helpful to have concrete guidelines and rules that could generalize across situations regarding disability terminology, language itself is a phenomenon that evolves and varies over time in response to cultural shifts. People with disabilities have varied preferences about the language they use to describe themselves and what language they prefer to be used to describe them. At the same time, disability researchers, including the current authors, are often given prescriptive guidance by journal editors about the specific disability language they should use (i.e., person-first language). Thus, the tension between approaches to disability language underscores a need for open dialogue about a culturally informed choice of disability language in scholarly publications. Accordingly, this commentary discusses the history and evolution of disability language, explores current trends, and recommends language for academic articles.

Adapting a health behavioral change and psychosocial toolkit to the context of physical disabilities: Lessons learned from disabled women with young children.

BACKGROUND: Mothers with physical disabilities (MPDs) face the behavioral and psychosocial changes of the motherhood transition with fewer resources, additional barriers, and higher risks than nondisabled mothers. In this study we sought guidance from MPDs on adaptations needed to a health promotion toolkit for behavioral and psychosocial health that was originally developed for nondisabled, primarily low-income, women. OBJECTIVE: To identify general themes for adaptations that would increase the suitability of the toolkit for MPDs. METHODS: 11 MPDs were interviewed by videoconferencing in a mixed-methods study about their perspectives on improving relevance of the existing toolkit for this population. The toolkit contained three components: assessment scale, feedback template on assessment results, and a decision aid related to behavior change. Interviews were analyzed using qualitative content analysis. RESULTS: Nine themes for improving suitability of the toolkit for MPDs were identified. Themes covered: Using non-judgment language; including strengths, not just risks; using exercise items applicable to persons with physical disabilities; being aware that functional ability was the key body image concern; considering motivational stages of behavioral change; providing choice in goal-setting for change; including suggestions for social support; identifying resources for health and adaptive parenting; and making health promotion resources available in alternative platforms (paper, electronic). CONCLUSIONS: The MPDs' feedback revealed ways that our toolkit for behavioral and psychosocial health could be improved to be inclusive of MPDs. The participatory methods utilized here are also recommended in designing new or revising existing materials aimed at enhancing health promotion for people with disabilities.

Experiences of Breastfeeding among Disabled Women.

BACKGROUND: Although breastfeeding has been extensively studied, there remains a paucity of data about the breastfeeding experiences of disabled women. Despite indications of similar pregnancy rates, disabled women seem to breastfeed at lower rates. Emerging research on the intersection of breastfeeding and disability has begun to shed light on how aspects of disability may impact breastfeeding. METHODS: This digital and participatory action research study used semistructured video or telephone interviews to evaluate the experiences of breastfeeding among 24 disabled women through descriptive content analysis. The cross-disability sample was composed of women with self-identified intellectual, developmental, physical, sensory, and psychiatric disabilities. Some women had multiple disabilities. RESULTS: Qualitative analysis revealed four themes relating to breastfeeding among disabled women: 1) communication difficulties with lactation consultants, 2) milk supply and latch problems, 3) intense pressure to breastfeed, and 4) positive interactions with health care providers. CONCLUSIONS: This study provides new information about the breastfeeding experiences of women with disabilities. Our findings suggest that disabled women should be better supported in their breastfeeding decisions and require greater access to disability-affirmative and informative clinical resources and accessible communication.

No body is expendable: Medical rationing and disability justice during the COVID-19 pandemic.

The health threat posed by the novel coronavirus that caused the COVID-19 pandemic has particular implications for people with disabilities, including vulnerability to exposure and complications, and concerns about the role of ableism in access to treatment and medical rationing decisions. Shortages of necessary medical equipment to treat COVID-19 have prompted triage guidelines outlining the ways in which lifesaving equipment, such as mechanical ventilators and intensive care unit beds, may need to be rationed among affected individuals. In this article, we explore the realities of medical rationing, and various approaches to triage and prioritization. We discuss the psychology of ableism, perceptions about quality of life, social determinants of health, and how attitudes toward disability can affect rationing decisions and access to care. In addition to the grassroots advocacy and activism undertaken by the disability community, psychology is rich in its contributions to the role of attitudes, prejudice, and discriminatory behavior on the social fabric of society. We call on psychologists to advocate for social justice in pandemic preparedness, promote disability justice in health care settings, call for transparency and accountability in rationing approaches, and support policy changes for macro- and microallocation strategies to proactively reduce the need for rationing. (PsycInfo Database Record (c) 2021 APA, all rights reserved).

#SaytheWord: A disability culture commentary on the erasure of "disability".

PURPOSE: To inform the field of rehabilitation psychology about the sociocultural implications of the term "disability," and explain the rationale behind the #SaytheWord movement, a social media call to embrace disability identity. METHOD: Review of the literature on disability terminology, the history of language use, and the relationship between attitudes toward disability and language. We reflect on the role of disability within the field of psychology and within the American Psychological Association (APA), including the underrepresentation of disabled psychologists and trainees with disabilities and the lack of mentorship opportunities available in the field. IMPLICATIONS: The authors argue that erasure of the word "disability" can have unintended and adverse consequences. We describe how erasure of disability identity in the context of current sociopolitical efforts to reduce and eliminate public services and supports for people with disabilities is especially threatening to members of the disability community. To move forward, the authors postulate that the disability movement must reconcile its own history of exclusion and adopt a disability justice framework. CONCLUSION: The field of psychology has a rich tradition of appreciation of cultural diversity and individual difference; yet, disability has largely been left out of these efforts. The disability movement is moving toward the status of a diverse cultural group with a social justice agenda parallel to those of other marginalized communities. The authors posit that psychology must play a stronger role in advancing the human rights of people with disabilities. (PsycINFO Database Record (c) 2019 APA, all rights reserved).

Disability identity and allyship in rehabilitation psychology: Sit, stand, sign, and show up.

PURPOSE/OBJECTIVE: The purpose of this conceptual paper was to put forth a call for rehabilitation practitioners to consider their role in developing disability identity in their clients, and to understand this action as a form of allyship toward the disability community. METHOD: This conceptual paper is organized to engage existing disability and disability-identity literature and its clinical implications. Practical tools and skills are offered for rehabilitation practitioners to develop disability identity and engage in disability allyship. RESULTS: An overview of disability identity and its relationship to clinical practice is presented by way of a literature review. Conversation starters and two activities are presented for rehabilitation practitioners to develop and engage with clients about their disability identities. Descriptions of allyship actions for practitioners are presented. DISCUSSION/CONCLUSION: In this conceptual paper, we framed disability in terms of both the medical and social models and argues that thinking about disability identity requires attention to the social model of disability. This attention is important, because it allows practitioners to think about themselves as allies to a particular community, rather than experts who must only "fix" clients' disabilities to elicit positive identity development. This shift toward allyship requires attention, engagement, and openness to see clients simultaneously as individuals and as members of a powerful, diverse community with a unique identity experience. (PsycINFO Database Record (c) 2019 APA, all rights reserved).

Person-first and identity-first language: Developing psychologists' cultural competence using disability language.

The American Psychological Association (APA) advocates the use of person-first language (e.g., people with disabilities) to refer to individuals with disabilities in daily discourse and to reduce bias in psychological writing. Disability culture advocates and disability studies scholars have challenged the rationale for and implications of exclusive person-first language use, promoting use of identity-first language (e.g., disabled people). We argue that psychologists should adopt identity-first language alongside person-first constructions to address the concerns of disability groups while promoting human dignity and maintaining scientific and professional rigor. We review the evolution of disability language and then discuss the major models used to characterize disability and people with disabilities. The rationale for person-first language and the emergence of identity-first language, respectively, are linked to particular models. We then discuss some language challenges posed by identity-first language and the current intent of person-first language, suggesting that psychologists make judicious use of the former when it is possible to do so. We conclude by offering five observations of ways that use of both person-first and identity-first language could enhance psychologists' cultural competence regarding disability issues in personal and scientific communications.

How we treat our own: the experiences and characteristics of psychology trainees with disabilities.

OBJECTIVE: To better understand the characteristics and experiences of psychologists and trainees with disabilities. METHOD: An invitation to participate in a survey of psychologists and psychology trainees with disabilities was sent to professional listservs related to psychology and/or disability. Fifty-six trainees and psychologists with doctoral training in clinical, counseling, school, or rehabilitation psychology completed the survey. Over half (57.1%) were practicing psychologists and 42.9% were current trainees. The most commonly reported disabilities were physical, sensory, and chronic health. RESULTS: The majority of the participants reported experiencing disability-related discrimination during their training, and less than one third had received mentorship from psychologists with disabilities. Less than half of respondents disclosed their disability to a university disability services office, and many relied on informal accommodations alone. Most participants did not disclose their disability during the graduate school, internship, or postdoctoral application processes. CONCLUSIONS: Professional psychology programs and training sites should work to remove barriers and provide support for trainees with disabilities, especially during preinternship doctoral training. Programs should not expect disability services offices to provide all support for students with disabilities, especially support related to clinical training.

Providing culturally competent supervision to trainees with disabilities in rehabilitation settings.

OBJECTIVE: Very little is known about the supervision experiences of psychology trainees with disabilities in rehabilitation training settings. It is clear from the lack of literature, however, that a gap exists in training and education for supervisors about working with disabled trainees and providing culturally competent supervision. The purpose of this article is to explore legal and ethical concerns, cultural considerations of disability as an aspect of human diversity, attitudinal barriers, and mentorship during the professional journey of training future psychologists with disabilities. METHOD: This article was developed by reviewing the pertinent literature. The authors utilized a sample vignette and pertinent points from their own experiences as trainees, psychologists, and supervisors with disabilities in rehabilitation settings. RESULTS: A thorough discussion of the diversity and cultural aspects of supervising disabled trainees is included, along with a discussion of the importance of mentorship. IMPLICATIONS: A summary of recommendations is provided for supervisors of trainees with disabilities.

Preferences for rehabilitation services among women with major limb amputations.

PURPOSE: We present five cases of adult females with major limb amputations, their concerns and preferences for services across the life span. DESIGN: A convenience sample of five veteran and nonveteran women aged 19-58 with major limb amputations participating in a regional VA Prosthetics Conference in 2010 took part in a panel interview. FINDINGS: The concerns identified by these women as high priorities included independence and participation in a full range of life activities, limitations in access, patient decision-making and body image concerns, and preferences for selected services. Maximizing function and quality of life for women amputees requires identifying patient preferences for rehabilitation and prosthetic services. Lessons learned could inform development of clinic-based rehabilitation care, prosthetic services, and studies of women with major limb amputations. CONCLUSIONS: As the current conflicts in Iraq and Afghanistan wind down, the number of women veterans seeking rehabilitation and prosthetic services will increase. With this information, rehabilitation and prosthetic service providers and organizations will be uniquely positioned to provide prevention and treatment of amputations for this growing population of women veterans in national care delivery systems and in communities. CLINICAL RELEVANCE: An open-ended facilitated discussion among a panel of women with major limb amputations provided insights for providers and organizations with respect to needs, concerns, and preferences for rehabilitation and prosthetic services.

Experiences of parents of children with congenital limb differences with health care providers: a qualitative study.

UNLABELLED: This article describes a qualitative, participatory action research study based in grounded theory, in which an online survey was developed and utilized to explore and generate suggestions for further research about the needs and health care experiences of parents of children with congenital limb differences (CLD) during the first year of the child's life. PARTICIPANTS: Fifty parents completed an online survey that was developed through review of themes in the literature and input from people with CLD and their families. Primarily with open-ended questions, the survey targeted the respondents' perceptions of the attitudes and approaches of health care providers. RESULTS AND DISCUSSION: Results indicate that parents consistently commented on three main areas of interaction with health care providers: attitudes, information, and emotional or psychological support. Research hypotheses generated from the data are presented. Implications and suggestions for future directions are discussed.