Disability Community Research Articles

Doing difference differently: Identity (re)constructions of adults with acquired disabilities.

The acquisition of a disability impacts one's corporeality and has been found to destabilize one's sense of personal and social identity. The article explores the psychological and behavioral adaptation strategies that are employed in response to resisting, incorporating, and/or integrating disability into one's identity. We refer to a study that considered factors that facilitate and/or impede disability identification, aiming to investigate the trajectory that the process of identity (re)construction takes. Seven individual, in person, semistructured interviews were conducted with adults with acquired physical and sensory disabilities. Data underwent thematic analysis. To encapsulate the intrapersonal as well as interpersonal dynamics inherent in identity (re)construction, the analysis was guided by an interpretative phenomenological lens and social identity theory (SIT). Disability identification is a complex and contradictory phenomenon, with strategies of resistance, incorporation, and/or integration fluctuating by setting and circumstance. These findings represent a significant departure from SIT literature-participants rather made use of more collectivist as opposed to individualistic adaptation strategies. Arguably, progress is being made with regard to disability pride, opening up a space for more positive and affirming disabled identities. Furthermore, disability identification is largely facilitated by greater opportunities for political advocacy and social support-online and in the disabled community. However, stigma-internalized and external-is still a major inhibitory factor to disability identification. Recommendations for rehabilitation programs and psychological professionals working with acquired physical and sensory disability are proposed. (PsycInfo Database Record (c) 2024 APA, all rights reserved).

2020 Improving pain management in non-verbal patients

Abstract Introduction Identification of pain generally relies on patient self-reporting of symptoms. Patients with limited communication, advanced dementia or learning disabilities are unable to self-report pain. This results in pain being under-recognised and under-treated. Consequences of this are serious and include physical and psychological distress, longer length of stay and worse outcomes.1 Methods Abbey Pain Score (APS) [Figure 1] was introduced on a single Healthcare of the Older Person ward.2,3 It was used as the primary means of assessing pain in non-verbal patients (NVP) in place of the usual verbal pain scale (scored 0-10). [Figures 2 and 3] Ward-based teaching for all doctors, nurses and healthcare assistants was conducted before introduction of the APS. Data was collected for 20 consecutive NVP. Figure 1: Abbey Pain Score (Six items observed & Score) Vocalisation: 0-3; Facial expression: 0-3; Change in body language: 0-3; Behavioural change: 0-3; Physiological change: 0-3; Physical changes: 0-3. Scoring scale: No Pain (0-2); Mild Pain (3-7); Moderate Pain (8-13); Severe (14+). Results At baseline we identified that pain as a symptom was missed in 54 % of NVP using the verbal pain score. With introduction of APS this dropped only slightly at 3 months but there was an increased uptake in scoring NVP on APS. With persistent engagement there was a significant decline in number of patients with un-managed pain needs. Figure 3: Abbey pain score (All patients with any pain) Baseline Pre-intervention: 21 / 39 (54 %); Post-intervention (3 months): 10 / 20 (50 % Post-intervention (12 months): 1 / 19 (5 %) Conclusion ABP is an effective means of addressing pain in NVP. It is simple to implement and can lead to significant improvements in patient care.

Acting as if: the utopian political thought and actions of the US disability rights movement

This article studies the response of the US disability community to the prevalent assumption that disabled people do not have a future, in the form of the disability rights movement. It provides an exploratory discussion of the key role played by utopianism in the response. In doing so, the article adds to critical theorizing on the importance of utopia to the oppression of non-dominant groups and to transcending that oppression. I use utopian studies scholarship to interpret the activities leading up to the passing of the Americans with Disabilities Act in 1990 as a minor utopia, characterized by an ambiguous, grounded, and provisional effort to imagine alternative ways of being. I articulate the central role played by a positive vision of disability and disabled people for this inversion of the historically negative relationship between utopia and disability. The article turns to disability activists to show that the movement countered exclusionary utopian approaches by acting as if it had a right to envision and enact a different, better future for all from the perspective of disability and disabled people.

Introduction to Disability and Antiableist Health Care: A Pilot, Student-Led Module for Preclinical Medical Students.

Physical medicine and rehabilitation physicians often care for disabled patients, who comprise America's largest marginalized population. Despite medical students' and physicians' discomfort with caring for disabled patients and the pervasiveness of ableism in health care, medical education lacks disability-focused education. Kern's approach to curriculum development and disability community input were used to design a three-part, elective curriculum for first-year medical students. Part one introduced disability models and language. Part two described how to perform a comprehensive history and physical examination for a disabled patient using ADEPT-CARE. Part three provided an overview of disability history and the disability rights movement. The curriculum's goal was to improve students' attitudes regarding disability health and self-perceived knowledge and confidence in caring for patients with disabilities. The curriculum was evaluated through presurvey and postsurvey. Students favorably reviewed the curriculum. One hundred percent of students ( n = 21) agreed or strongly agreed that the curriculum improved their knowledge of disability health, increased their perceived confidence in caring for patients with disabilities, and enhanced their medical education. There were no statistically significant differences in students' attitudes toward patients with disabilities after curriculum completion. Our asynchronous module provides one potential curriculum for increasing preclinical medical students' self-perceived knowledge of disability health.

Exploring the occurrence of microaggressions in the genetic counseling student-supervisor relationship: A mixed-methods study.

While research has shown that genetic counseling students with minoritized racial or ethnic identities face microaggressions throughout graduate training, quantitative data regarding the frequency of these experiences have not been reported. The purpose of this mixed-methods study was to investigate the frequency and types of microaggressions experienced by graduates of accredited genetic counseling programs in the United States during fieldwork rotations. A quantitative survey was administered to assess how frequently 14 different types of microaggressions occurred in interactions with supervisors. Survey responses were analyzed using situation-based coding (the number of different types of microaggressions experienced) and frequency-based coding (the sum of participants' weighted Likert answers). Select survey respondents with minoritized identities were interviewed to better contextualize and categorize microaggression experiences. Analysis of 87 survey responses revealed that participants with minoritized racial and ethnic identities experience significantly more types of microaggressions (t(61) = 2.77; p = 0.007) at a significantly higher frequency (t(55) = 2.67; p = 0.010) than their white counterparts. Participants who identified as part of the disability community were also found to experience significantly more types of microaggressions (t(10) = 3.25; p = 0.009) at a significantly higher frequency (t(9) = 2.32; p = 0.045) than those who did not. Qualitative analysis of 11 interviews revealed that microaggressions from supervisors included offensive and inappropriate comments, unequal treatment, cultural intolerance, and disparaging feedback. Overall, our data present evidence that students with minoritized racial and ethnic identities and students with disabilities are subjected to a variety of inequitable, exclusionary, and harmful interactions. As a result, we recommend that all supervisors receive training about recognizing and preventing microaggressions to ensure that students are provided with an equitable and inclusive training experience, regardless of identity.

“What Do We Have to Do?” Community College CTE Faculty Perceptions, Preparedness, and Propositions in Supporting Disabled Students’ Employment Opportunities

Objective/Research Question: The purpose of this grounded theory study is to explore how community college CTE faculty members aim to support disabled students in their career pursuits. Methods: This constructivist grounded theory study entailed interviewing 20 faculty members across two southeastern United States community colleges. Results: Findings unveil the prominence of community college faculty holding mixed perceptions and limited understandings of disabled individuals’ experiences in CTE fields, tending to weed disabled students out of these professions, and possessing various ideas for how to better enable disabled students’ success, including bolstering disability awareness and acceptance. Conclusions/Contributions. These insights contribute to the formation of the 3Ps Model of Faculty Professional Engagement with Minoritized Students that will guide researchers in how to understand the processes that shape faculty engagement with minoritized students. The study also reveals opportunities for growth in how community college faculty and practitioners address issues surrounding building up disabled community college students’ employment pathways.

Bilingualism, augmentative and alternative communication, and communication disability: a scoping review

Bilingualism, augmentative and alternative communication, and communication disability: a scoping review

The Intersectionality of Climate Change and Post-Stroke Aphasia.

Persons with communication disabilities including persons with post-stroke aphasia (PWAs) possess a vulnerability to climate change as a result of their communication impairments. The disproportionate effects of climate change are likely to exacerbate preexisting inequities in social determinants of health. Communication disability intersecting with other characteristics subject to discrimination (e.g., race, age, sex, income) may lead to inequities in climate-related adaptive capacity. This article echoes earlier concerns related to climate change and further educates healthcare professionals about the impact of climate change on the global human population, with particular consideration of PWAs. The aims of this article are the following: (1) to broaden the understanding of aphasiologists and clinicians caring for PWAs about climate change and the contributions of human activity (anthropogenic) to this crisis; (2) to describe climate change and its impact on health; (3) to detail the intersectionality of climate and health; (4) to explore climate change and its potential effects on PWAs; and (5) to offer hope through emissions reduction, adaptation, resilience, and immediate change.

Historical Trauma and the Disability Community

Historical Trauma and the Disability Community

Socialization Into and Through Doctoral Programs in Adapted Physical Activity.

This study examined doctoral students' occupational socialization experiences in U.S. adapted physical activity doctoral programs. Twenty-eight doctoral students were recruited and participated in semistructured, in-depth interviews. Interview transcripts were analyzed through a collaborative qualitative analysis, which resulted in the construction of four themes: (a)early socialization experiences foster a positive, but limited impression of physical education and physical activity; (b)doctoral education is pursued to have a greater impact on the disability community; (c)relationships with socializing agents provide support during doctoral education; and (d)coursework and learning in the community facilitate preparation for faculty roles. The findings indicate that there are several similarities between doctoral students and their peers in other doctoral degree programs. Some of these similarities point to issues that may concern prospective doctoral students and faculty members in adapted physical activity terminal degree programs.

Focusing on life rather than illness: the lived experience of children with life-threatening and life-limiting conditions—a qualitative study

Background: The perspectives of children with life-threatening or life-limiting (LT/LL) conditions have predominantly been conveyed through their parents rather than heard from the children themselves. Despite an increase in studies focusing on children’s perspectives in pediatric palliative care, this research remains limited, particularly in including children who are unable to express themselves orally. Objective: This study seeks to address gaps in existing knowledge, especially the limited inclusion of children’s perspectives and the exclusion of children with communicative and cognitive disabilities. The aim of this study was to explore the lived experiences of children living with LT/LL conditions. Design: The study has a qualitative, hermeneutic phenomenological design inspired by van Manen’s phenomenology of practice. Methods: Twelve children with cancer or genetic conditions participated. Due to the children’s varying cognitive and communicative abilities, multiple data collection methods were employed to capture the children’s perspectives, including interviews, interactions, descriptions of the children’s non-verbal expressions, and an adapted photo elicitation method. Data were analyzed using thematic analysis. Results: The findings showed that the children’s attention revolved around life rather than illness. The analysis revealed the presence of three themes: wanting to engage in life, being dependent on familiar relations, and the importance of cherished items. Conclusion: Professionals across various levels within pediatric palliative care should acknowledge children’s desire to engage in life despite serious illness and facilitate participation. Practices should be implemented to support children’s agencies and expressions of what is important to them. This recognition can guide care plans and interventions at all levels of pediatric palliative care when a child is living with an LT/LL condition. The study emphasizes that children with LT/LL conditions are children first and foremost, with a fundamental need to participate in meaningful activity, just like any other child.

Cripping instagram: Embodied, Critical, and Creative Cultures of Use

ABSTRACT: How do disabled and chronically ill artists and curators navigate corporate-owned social media platforms as self-authored disabled subjects and communities? Mobilizing concepts from crip theory and accessible curation together with discourse and visual analysis, and engaging with artists’ and curators’ views about social media platforms and selfie culture via interviews, this paper develops a conceptual framework that prioritizes the intertwining of emergence, endurance, and exhaustion in crip artistic and curatorial online practices. The potential for a radical social media disability aesthetics takes shape as a powerful but contingent and troubled matter of digital crip emergence/emergency, a mode of contending with social media’s demands and violences through embodied automedial practices that foster presence, community, and creativity and contest the terms of social media visibility. This article activates this model by analyzing collaboratively authored Instagram accounts that feature residencies.

Assessing inequalities in access to the city’s green and blue spaces through the experiences of its residents

<p>We report on the findings of a qualitative research study exploring the benefits to mental, physical, and social well-being of regular interaction with the city’s green and blue spaces using a walking interview method to gauge the views of fifty frequent visitors to the city’s parks. This was followed by a second phase of research consisting of four focus groups exploring the experiences of those whose access to the city’s green and blue spaces is restricted, noting the effects of these limitations on their general well-being. Despite government-backed urban sustainable redesign initiatives to promote greater access to the city’s biodiversity, its elderly, disabled, and poorer socio-economic communities continue to encounter restrictions regarding their access to its green and blue spaces. By highlighting these issues, our aim is to show how a partial membership of the city’s sustainable development plan is enacted (i.e., a simultaneous inclusion of all community members rhetorically and an exclusion of the needs of many in practice) and reinforced in ways that reproduce socially embedded patterns of inequality. It calls for a more sociologically grounded analysis of the persistence of such inequalities as an important appendage to current discourse on the restorative benefits of the ‘15-minute city’ and as a corrective to current public participation measures that fail to incorporate lived experiences of unequal access to the city’s nature. It proposes a framework that addresses more effectively the distributive, recognition, and procedural dimensions of inclusive, sustainable city living.</p>

Perceptions of Communication and Mobility Recovery Among Stroke Survivors With and Without Aphasia.

Self-perceived recovery after stroke can substantially impact quality of life. Yet, a disability paradox exists whereby disability and perceived recovery do not align. This study explored stroke survivors' perceptions of their communication and mobility recovery, including perceived facilitators and barriers. Potential differences between the experiences of participants with aphasia (PWA) and participants without aphasia (PWOA) were also examined to explore the impact of communication disability on recovery experience. Semi-structured interviews were conducted with 17 adults with stroke 3 months after discharge from inpatient rehabilitation. Qualitative data in the form of interview transcripts were analyzed using thematic content analysis. Participants described their communication recovery primarily in terms of word-finding difficulty and slowed language formulation; they described their mobility recovery in terms of their ability to walk, their use of an assistive device, or their ability to participate in pre-stroke activities. Facilitators to recovery were described in the areas of (1) family involvement, (2) rehabilitation services and professionals, (3) personal factors, and (4) the need for self-reliance. Barriers were expressed in the domains of (1) physical difficulties, (2) communication difficulties, and (3) psychological difficulties. Key findings from this study include perceived needs for a high intensity of rehabilitation, earlier implementation of communication partner training for families of stroke survivors with communication impairments, and consideration of factors outside of stroke when tailoring intervention to the individual. Overall, these findings suggest a continued need for individuation rather than standardization of care, with an eye to both impairment and broader quality of life factors.

Assessing the Use of Recommended Practices in Adapted Physical Activity/Education Experiential-Learning Programs.

This study investigated the use of recommended practices in university-based experiential learning associated with adapted physical activity and education (APA/E) undergraduate courses. Participants (N = 165) were instructors of APA/E courses with an experiential-learning component and/or professionals involved in APA/E experiential-learning programs at their university. Participants completed an online questionnaire designed to describe program characteristics and evaluate the use of two sets of practices, including those recommended for involving students and people with disabilities. Findings highlight low proportions of the use of practices recommended for people with disabilities and indicate that significantly more practices recommended for students were implemented (Z = -10.45, p < .001). Findings from this study have several implications for evaluation and intervention in APA/E experiential learning, such as including the disability community in planning and designing programming to benefit both students and people with disabilities. Instructors should aim to increase their implementation of practices recommended for involving people with disabilities.

Ilustrasi Praktik Diskriminasi Pengampuan Penyandang Disabilitas Mental dan Tinjauan Maslahat dalam Hukum Islam

The discourse on the legal capacity of persons with mental disabilities is currently increasing among the observers of the rights of the disabled, including Islamic law observers. The present situation is driven by the demands of the disabled community who prefers the policy on giving parole to be abolished, and hopes for it to be altered with another newer policy known as ‘supported decision making’. Parole is considered to be discriminatory, as it violates human rights, and eradicates the rights of certain legal subject which such rights are categorized as the non-derogable rights. This article touches upon two issues, first, it illustrates the practice of offering parole in a way that is considered discriminatory for persons with mental disabilities. Second, it reviews the concept of benefit in Islamic law by looking at the practice of forgiveness that has been conducted. The method used in this research is empirical juridical. The research concluded that, firstly, the parole policy has had an impact on discriminatory practices, violating the rights of persons with mental disabilities, and should be abolished and replaced with a newer policy model, namely ‘supported decision making’, which means that persons with mental disabilities are not replaced (substituted) but facilitated by the creation of a system that provides support in the decision making, especially legal decisions. Second, in Islamic legal thoughts, the policy of giving forgiveness is considered not in line with the concept of benefit. Benefit means that the most essential feature in the legal system is the benefit, public interest, and positive outcomes resulting from the said system. An important conclusion in this research confirms that the parole policy has had a negative impact on persons with mental disabilities, thus should be replaced with a policy of ‘supported decision making’ which is considered useful, non-discriminatory, and in line with the rights of persons with disabilities.

Entrepreneurs with Disability: A Comprehensive Study in the Context of Uncertainty

The purpose of this research is to explore how disabled social entrepreneurs deal with uncertainty, the role of technology in entrepreneurial activities, and gendered implications on social entrepreneurship with uncertainty. The data are from understanding different secondary research that already exists on social entrepreneurship and disability, and the use of technology for the disabled. The discourse on social entrepreneurship and uncertainty, a mixed method of narrative and thematic analysis was chosen. The qualitative data have been analysed from peer-reviewed research papers, newspaper articles, journals and quantitative data from the global UN websites, and government. Entrepreneurs with disabilities (EwDs) have links to higher resilience in uncertainties and competencies that attribute to the development of their social enterprise. Technology also acts as a catalyst for EwDs in the face of uncertainty. An overarching limitation that emerged is the lack of data, and literature available on the implication of uncertainty in the context of disabled entrepreneurs. Information on disabled women is also limited. A social implication of this article is the empowerment of EwDs. They are equipped with entrepreneurial skills despite their disabilities. Besides, advocacy of technology can serve as a boon for the disabled community in the face of uncertainty. This research paper has been written using authentic data emerging from secondary research.

Creating a User-Inventor Community: How Disabled People Innovated and Marketed Disability in Early Nineteenth-Century America.

Early nineteenth-century America's robust trade in medical and health care products is richly documented, yet many scholars have overlooked just what role people with impairments played in that industry as inventors and retailers, forming relationships with clients based on their shared experiences of disability. A study of newspaper advertisements, patents, organizational records, medical accounts, and objects suggests that many impaired and formerly impaired producers marketed products to impaired consumers, creating an organic and unselfconscious network of disabled people who made, sold, and bought knowledge and devices about and for disability. Recovering this world of disabled inventors, retailers, and their clients reveals how disability fueled innovation in early nineteenth-century America, expanding scholarly understandings of who participated in and profited from the burgeoning medical and health care economy. This study also suggests that the market was an early venue of disability community where people came together around their common bond.

Pendampingan Ekonomi Masyarakat Difabel Kabupaten Jepara Pasca Pandemi Covid 19

The Economic Downturn in general has an impact on vulnerable communities. One of those affected by the pandemic storm is the disabled in Jepara Regency. PPDI (Indonesian Association of Persons with Disabilities) Jepara Regency is one of eleven disabled communities in Jepara that focuses on the microeconomic sector. The method used in this service is the ABCD (Asset Bassed Community Development) method. The purpose of this service is to provide assistance and training in HR management, business management and entrepreneurship training, independent business assistance and assist government and private banks in accessing capital and modifying the tools needed to support their business, providing assistance and training on online sales promotion and marketing management both direct and online sales. The results of this service are that partners can carry out their business by applying management knowledge, partners with disabilities have confidence in carrying out their business and partners can carry out their business by promoting their business through online and offline mechanisms and there is the opportunity to partner with a private bank, namely BMT Arta Abadi Jepara and get access to productive monitoring from Baznas Jepara Regency

Queer and Disabled: Exploring the Experiences of People Who Identify as LGBT and Live with Disabilities

As a minority within a minority, individuals who have a disability and identify as LGBT are at the intersection of multiple stigmatised identities. This brings with it unique challenges, including the possibility of oppression and rejection by both the LGBT and disability communities, which can impact on identity and wider life experiences. While previous reviews have explored issues relating to intersectionality, multiple oppression, identity, acceptance, and sexuality, an overview of the impact on wider life experiences is missing. This narrative review presents empirical findings published since 2000 about the wider everyday experiences relating to attitudes and discrimination, education, employment, finances, health and well-being, support, and intimate relationships among people who identify as LGBT and have a disability.