Journal of Disability Studies

Trauma, Displacement, and the Construction of Disability in Jerry Pinto’s Em and the Big Hoom: A Psychosocial Perspective

2026-08-09T14:16:05+00:00

Jerry Pinto’s Em and the Big Hoom represents mental distress not only through the symptoms associated with Imelda Mendes’s illness but also through the family, social, linguistic, and institutional environments in which that illness is experienced. This article examines the novel through trauma studies, psychoanalytic literary criticism, and disability studies, with particular attention to displacement, memory, language, stigma, caregiving, and psychiatric authority. Rather than treating Imelda’s bipolar disorder as a clinical consequence of migration, the article asks how the narrative connects her history of forced displacement from Rangoon with experiences of loss, cultural discontinuity, economic insecurity, family conflict, and the difficulty of belonging. The analysis also considers the narrator’s experience as a caregiver and as the child of a woman repeatedly labelled ‘mad.’ The novel’s recurring attention to words such as ‘mad,’ ‘normal,’ ‘patient,’ and ‘diagnosis’ demonstrates how language can become a mechanism of exclusion while also becoming a means of resistance. The article further examines the novel’s representation of psychiatric institutions, including its treatment of electroconvulsive therapy, not to evaluate clinical treatment in itself but to analyse the narrator’s concerns about autonomy, identity, dignity, and institutional power. The article therefore argues that Em and the Big Hoom constructs disability as a psychosocial and relational experience: distress is located within an individual body and mind, but disability is intensified by stigma, social expectations, family pressures, and institutional practices.

Keywords: Disability, displacement, trauma, bipolar disorder, psychoanalysis, caregiving, stigma, psychiatric institutions

Eudaimonia in Action: Leisure in the Lives of Persons with Intellectual Disabilities

2026-01-06T10:54:35+00:00

Leisure is a domain in life that allows for rest, relaxation, development and engagement of the individual. Drawing on a phenomenological study among persons with intellectual disabilities in Kerala, the paper explores the nature of their leisure experiences. The findings reveal that leisure for the participants is not a discrete activity or time slot but a deeply embedded, relational, and purposive aspect of everyday life. By drawing on the narratives and leisure routines of the participants, the paper argues that participants’ leisure experiences are characterized by meaning-making, emotional connection, and the pursuit of self-affirmation, even within constraint.

Keywords: Intellectual disability, leisure, eudaimonia, participative research

The Linguistic Adaptation and Translation Validation of The ‘First Screen’ Tool in Ten Indian Regional Languages

2026-02-24T07:11:36+00:00

Background: Screening for Specific Learning Disabilities (SLD) in India is limited by the lack of accessible screening tools in many Indian regional languages, which hinders early identification. Aim: The present study focused on the linguistic adaptation and adequacy validation of the ‘First Screen’ screening tool, originally developed and validated in English, into ten Indian regional languages. Methods: The adaptation process included forward translation, back translation, expert review, iterative revisions, and adequacy and error analyses. Three expert raters evaluated the back-translated items for conceptual equivalence, clarity, and linguistic accuracy. Results: Inter-rater agreement for the back-translated items ranged from 81.25% to 97.22%, with six languages showing agreement above 90%. All ten languages met the adequacy threshold of 80%. Error analysis identified 66 items requiring modification due to altered meanings or insufficient conceptual correspondence. The finalized translations were found to be linguistically suitable for use within their respective language groups. Conclusion: The ten adapted versions of ‘First Screen’ demonstrated linguistic adequacy for use within their respective language groups, supporting the app’s potential for broader reach in multilingual contexts. Future studies should evaluate the usability and screening performance of the app in real-world settings and extend translation efforts to additional Indian and international languages.

Keywords: specific learning disability, screening tool, linguistic adaptation, early identification

Determinants of Inclusive Pathways to Skilled Deliveries for Women with Disabilities in Rural Northern Ghana

2026-04-14T00:08:58+00:00

Background: Women with disabilities in Ghana, particularly in the Northern Region, experience multiple forms of discrimination that limit their access to maternal healthcare services. Although Ghana has made progress toward universal health coverage, equitable access to skilled delivery services remains a significant challenge for this population. Objective: This study explored the barriers and facilitators influencing the utilization of skilled delivery services among women with disabilities in rural Northern Ghana to inform policies and interventions aimed at promoting equitable maternal healthcare. Methods: A mixed-methods study design was employed. Quantitative data were collected from 350 women with disabilities, while qualitative data were obtained through interviews with women with disabilities, family members, healthcare workers, and community health volunteers. Quantitative data were analyzed using descriptive statistics, chi-square tests, and logistic regression, whereas qualitative data were analyzed thematically. Results: Overall, 27.4% of participants utilized skilled delivery services. Utilization was significantly lower among women with physical disabilities (22.7%) than among those with sensory (31.6%) and cognitive disabilities (29.4%) (p < 0.01). Distance to a health facility was a significant determinant of skilled delivery utilization (χ² = 15.62, p < 0.001); women residing more than 5 km from a health facility were 2.8 times more likely to deliver at home (OR = 2.8, 95% CI: 1.7–4.6). Educational attainment was also significantly associated with skilled delivery utilization (χ² = 12.44, p = 0.002), with women without formal education being less likely to access skilled delivery services. Qualitative findings identified transportation challenges (71%), inaccessible health infrastructure (68%), and stigma and discrimination (63%) as the major barriers to accessing skilled delivery care. Conclusion: Utilization of skilled delivery services among women with disabilities in rural Northern Ghana remains low due to intersecting socioeconomic, geographical, and health system barriers. Promoting equitable maternal healthcare requires disability-inclusive policies, improved physical accessibility of health facilities, strengthened community support and volunteer networks, accessible transportation, and targeted interventions to reduce stigma and discrimination.

Keywords: Women, disability; Skilled delivery; Maternal health; Rural Ghana; Health system responsiveness; Disability inclusion

Exploring the Lived Experiences of Caregivers of Children with Autism in Accra

2026-06-22T02:15:06+00:00

Background: Caring for children with autism (CWA) can place substantial emotional, social, financial, and psychological demands on caregivers, particularly in low-resource settings with limited specialised services and institutional support. Despite growing research on autism caregiving in Ghana, limited attention has been given to caregivers’ lived experiences.

Objective: To explore the lived experiences of caregivers of CWA in Accra, focusing on their caregiving roles, needs, challenges, and coping mechanisms.

Methods: A qualitative interpretive phenomenological approach was used. Purposive sampling recruited 20 caregivers of CWA with support from three institutions providing autism-related services in Accra. Data were collected through individual in-depth interviews and analysed thematically using Braun and Clarke’s approach.

Results: Three interconnected educational and therapeutic roles emerged alongside traditional parental responsibilities, increasing caregivers’ burden of care. Mothers assumed greater caregiving responsibility, whereas fathers reported greater psychological stress. Caregivers’ needs centred on acceptance, which was challenged by negative societal attitudes and associated with physical, social, and psychological difficulties. Financial reframing, social support, and religious activities were important coping mechanisms.

Conclusion: Caregivers of CWA undertake complex educational and therapeutic roles in addition to routine caregiving, contributing to substantial burden. Recommendations: Social protection programmes should better address the needs of CWA and their caregivers, alongside caregiver-skills training, family-inclusive strategies, and community-based autism awareness through partnerships among government, NGOs, traditional authorities, faith-based organisations, and social workers.

Keywords: Autism, caregiver, identity theory, caregivers, inclusivity