Positive Disability Identity Research Articles

“People talk about FASD diagnosis but barely any young people are asked about it”: Diagnosis perspectives and disability identity in adolescents with FASD

PurposeYoung people with Fetal Alcohol Spectrum Disorder (FASD) are underrepresented in research and in public/professional discourse around the diagnosis and the impact of this disability. This study explores adolescents’ views about their self and disability identity, and knowledge and attitude towards the FASD diagnosis. MethodEight adolescents aged 12–19 years with an FASD diagnosis and in education, participated in this study. Data were collected online using Photovoice methodology and analysed using Interpretative Phenomenological Analysis. ResultsAdolescents expressed positive views of their FASD diagnosis in terms of its salience for self- understanding. They provided biological and causal explanations of FASD but there were no attributes of blame or shame towards biological parents. Adolescents primarily self-identified with personality traits and interests/hobbies but acknowledged FASD as part of their identity. As the adolescents developed their disability identity, parents and peers played different roles in the provision of information, support, and disclosure of the diagnosis. ConclusionThe views expressed by adolescents with FASD about the value and impact of the FASD diagnosis, and the disability identity process, were similar to other groups of young people with different neurodevelopmental and physical conditions. Self-understanding and advocacy relating to diagnosis and disability during adolescence can enhance wellbeing, access to supports and a positive self-identity. Professionals across different services can play a proactive role to develop the positive disability identity of adolescents with FASD.

Normalizing Abnormal Psychology: An Anti-Ableist Approach

Introduction A survey course of mental health diagnoses is a commonly taken undergraduate psychology course and presents a critical opportunity for addressing ableism in psychology. Statement of the Problem The presentation of mental health diagnoses is wrought with ableist beliefs, both in the historical and contemporary context. These ableist beliefs are a prime driver of stigma and its associated outcomes including worse mental health and avoidance of treatment professionals. Literature Review The present article presents the ableist context of the course typically titled, “Abnormal Psychology,” and offers an alternative: the building of an anti-ableist curriculum grounded in disability studies. We use the social model of disability and disability identity as guiding principles, while inquiry-based learning is the pedagogical driver. Teaching Implications We review six practical strategies, which include introducing the social model, renaming the class, starting with positive disability identity, complicating the continuum-categorical dichotomy, centering disability representation, and emphasizing consumer rights and direction. Conclusion By leaning on disability studies and Mad Pride, “Abnormal Psychology” can deconstruct its ableist roots and be the foundation for a destigmatized, positive approach towards the study of psychological disorders. We offer future directions, including potential ways to continually assess anti-ableist efforts.

Embracing Enablement: Impairment, Community and Disability Identity in Young Adult Fiction

Many authors in recent years have worked to encourage the inclusion of disabled people and to show disability characters in a positive light. In order to accomplish this, they tend to produce counter-disability characters and scenarios to promote enablement. This textual analysis focuses on three young adult fictions that provide positive portrayals of protagonists with disability, including Out of My Mind (Draper, 2010), Five Flavors of Dumb (John, 2010) and Jerk, California (Friesen, 2008). Drawing on the social identity theory and the social model, this paper explores how the protagonists' disability identities are formed. Three themes emerged from the textual analysis: impairment and identity, which looked at the complex interactions between impairment and identity; community transformation, which analyzed factors causing both socially constructed disability and positive interaction; and positive disability identity, which examined how protagonists navigate challenges and form positive identity. This study may offer recommendations for educators, parents, and researchers who might utilize this study to advance and build an inclusive society.

“I’m a good mother; I play with her; I love her”: The motherhood experience of women with intellectual disabilities from empowering and intersectional approaches

BackgroundDespite the growing recognition of the right of women with disabilities to become mothers, this right remains significantly under-fulfilled among women with intellectual disabilities (ID). Whereas the voice of mothers with ID has begun being heard in research, most studies still focus on the barriers to motherhood and the difficulties associated with childrearing. ObjectiveThe study aims to understand and describe the subjective experiences of mothers with ID, focusing on positive aspects from empowering and intersectional approaches. MethodSemi-structured interviews were conducted with 11 mothers with ID who live in the community and raise their children. ResultsFour themes emerged from the interviews: (1) A dream that came through; (2) Motherhood as an empowering process; (3) The intersection between the disability identity and the motherhood identity; (4) Family involvement as a resource and a challenge. ConclusionsThe findings highlight the need to meet the mothers' twofold identity in an empowering way by constructing a more positive disability identity and further cultivating their motherhood identity. They also highlight the important role of the family in supporting mothers with ID. A positive disability identity and family support are needed to increase these women's emotional well-being and overall quality of life.

Social Support through a Blindness Organization Predicts Life Satisfaction and Positive Disability Identity

Background: Disability identity refers to self-concept as a person with a disability and includes such attitudes as disability affirmation and acceptance. Disability identity is emerging in psychological literature as a predictor of life adjustment among people with disabilities. Objective: This study examined predictors of disability identity and well-being (i.e., psychological distress, life satisfaction) among members of a blindness organization. The author hypothesized that perceived social support would predict more positive disability identity and higher life satisfaction as well as lower psychological distress. Methods: Participants included 142 members of the National Federation of the Blind (NFB) who participated in an online survey in 2020. Results: Findings from linear regression indicated that NFB members who reported greater social support through the organization had higher life satisfaction and more positive disability identity, adjusting for impairment-related, personal, and environmental factors. Conclusion: This study highlights the association between feeling supported through the NFB and experiencing higher satisfaction with life and more positive disability identity.

The spectra of concealment and disclosure of disability: the experiences of people with mild disability in South Korea

Many disabled people choose to conceal or disclose their disability after weighing diverse levels of discrimination, social awareness, and welfare benefits they encounter in their daily lives. However, few studies have focused on choice experiences regarding concealment or disclosure of disability in various daily situations. Drawing on the experiences of 14 people with mild disabilities in South Korea, this study explores the multi-dimensional contexts of people who choose to present or hide their disability. Our analysis identifies five spectra of disability concealment /disclosure: aversive concealment from social oppression, defensive disclosure for self-protection, aggressive disclosure of disability identity, responsive disclosure for welfare benefits, and seeming concealment of disability identity. Such spectra indicate that the choice to conceal or disclose is a flexible self-presentation process. Furthermore, we discuss how various concealment/disclosure patterns are influenced by South Korea’s radical disability movement that aimed to highlight the existence of people with disabilities in society. Points of interest This study raises a doubt about the existing dichotomised perspective that views hiding disability as a result of disability discrimination and revealing disability as an expression of positive disability identity. This study argues that hiding/revealing one’s disability are strategic options that an individual can choose from in accordance with his/her situation. This study explores why and how disabilities are hidden/revealed by interviewing 14 people with nonvisible disabilities in South Korea. The participants choose to hide or disclose their disability after weighing the disability discrimination, prejudice, recognition, and benefits that will arise from each situation. Beyond the two existing dichotomies (hiding vs. revealing disability), our findings highlight five different strategic options that interviewees choose from according to their situational contexts.

Exploring disability identity with adolescents.

The purpose of this study was to qualitatively explore how adolescents conceptualize disability identity and what factors may influence adolescent disability identity development. Research Method/Design: These data were collected through semistructured in-depth interviews with 24 middle and high school adolescents with disabilities. The participants had a wide range of disabilities, including physical disabilities, learning disabilities, ADHD, Autism, and others. Analyses started with Hamilton's Rapid Assessment Process followed by identifying structural and in vivo codes using a computer-assisted qualitative data analysis tool to allow for multiple coders and memo writing across the research team. The results indicate that adolescents are undergoing a heterogeneous and complex process to develop their disability identity. Additionally, the salience of the participants' disability identity often varied depending on the environmental context. Furthermore, social connections to peers with and without disabilities played an important role in the development of many participants' disability identities. These findings suggest that adolescents with disabilities are engaging in a multifaceted meaning-making process to develop a sense of disability identity. Rehabilitation Psychologists and other practitioners can support disabled adolescents by helping them to discuss and develop a positive disability identity. Furthermore, practitioners can help disabled adolescents successfully develop their disability identity in a variety of different settings and contexts. (PsycInfo Database Record (c) 2021 APA, all rights reserved).

‘You’re always fighting to be recognized’: a young blind man’s journey of upward mobility and intersectional activism

The author presents a case study of an in-depth interview conducted with David, a young blind man who has faced multiple and interacting forms of inequity. David’s experiences of blindness have carved out a path of upward economic mobility, as he gained cultural capital through a blind person’s organization in the United States. In addition, David’s experience of developing a political perspective on his disability was formative in shaping his process of coming out as queer and becoming active in Latinx issues and politics. David has gained critical skills in bringing intersectional perspectives to multiple activist communities to which he belongs. The author illuminates the importance of recognizing how culture matters in shaping the life trajectories of individuals with disabilities, which go beyond additive models of oppression. Points of interest Disabled people belong to multiple communities, but researchers have too often treated disability as a singular identity. Activist communities have also been slow to recognize that people’s backgrounds interact with disability. The participant’s journey to developing a positive disability identity had a profound impact on other aspects of his identity, including his social class position, his gay identity, and his advocacy around immigration issues. The participant’s experiences and advocacy within activist communities illuminates how various forms of inequity intersect.

Mobility Tool Use Relates to Disability Affirmation among Adults with Visual Impairments

Introduction: Research is beginning to support the association between positive disability identity and well-being among individuals with disabilities, including those with visual impairments (i.e., blindness and low vision). To enhance practitioner understanding of how to support individuals with visual impairments, research is needed to examine how disability identity attitudes may vary based on disability characteristics in this population. Methods: Using multiple linear regression, the author examined the association between impairment-related factors and personal disability identity (PDI; i.e., disability affirmation and disability acceptance) and group disability identity (GDI) in a sample of 212 adult U.S. residents with visual impairments. Results: Results of this study indicated that participants who use a mobility tool (cane, dog guide, or both) have higher self-reported disability affirmation ( p = .001)—an identity construct related to feelings of disability pride versus shame—after controlling for age, gender, and impairment-related factors (e.g., severity indicators). The Cohen’s f 2 value for the affirmation model was .15, a medium effect size (Cohen, 1988). The regression on GDI indicated that younger participants, in general, reported higher feelings of connection to the disability community (i.e., higher GDI; p = .001); Cohen’s f 2 was .13, a small effect. The regression on disability acceptance yielded non-significant findings. Discussion: Researchers and practitioners working with adults who have visual impairments should consider the relationship between an individual’s disability affirmation and decision-making regarding mobility tool use and training . Future research should also examine hypotheses regarding the negative association between age and GDI among adults with visual impairments. Implications for practitioners: Practitioners within the field of visual impairment may benefit from a consideration of consumer disability identity, including disability affirmation and disability group affiliation.

Epilepsy at the intersection of disability, gender, and culture: A duoethnography

Epilepsy is a neurodevelopmental disorder that affects millions of adults and children. Several different types of seizures, ranging from generalized which affect both sides of the brain to focal seizures that are rooted in one location of the brain. In addition to the physical impact of epilepsy, there are many emotional and identity consequences of living with epilepsy. An area that is not yet explored is the impact of epilepsy on the lives of women of color. In this paper, we fill this gap by exploring the experiences of two women of color who have had epilepsy beginning in early childhood through motherhood. One of the women is Mexican-American and an early career faculty in social work. The other identifies as a Chinese immigrant doctoral student in disability studies. Together, these stories bring to the literature voices that have not been actively engaged by epilepsy research or academia. We use a duoethnographic approach in this work given that this method provides an opportunity to explore identity and intersectionality and juxtapose our narratives surrounding epilepsy. By applying disability critical race theory (DisCrit) to our narratives, we identified how fluctuating epileptic symptoms, gender, and culture, interact with the layers of our epileptic identities. Furthermore, we discuss how our experiences with epilepsy exposes the lack of accommodative efforts in both the healthcare and education systems for individuals with invisible neurodevelopmental disabilities. This duoethnography has important implications for engaging youth with epilepsy and other invisible disabilities. By showcasing our journey of “coming to terms” with epilepsy, our dialog provides insights into how to support youth in building a positive disability identity. Our experiences in academia set up a basis to discuss accommodations for students with epilepsy and other invisible disabilities.

Principal Leadership for Inclusion: Supporting Positive Student Identity Development for Students with Disabilities

Researchers in special education and educational leadership have engaged in collective efforts to highlight the critical role of the principal when it comes to creating inclusive schools for students with disabilities. Primarily, research and prescriptive writings have focused on a set of school improvement practices tailored to creating systems, interventions, and teaching practices that support inclusion. However, much of this scholarship has overlooked the importance of disability identity development. In this article, we review leadership practices that support inclusion with a focus on how principals can foster a school that supports positive disability identity development through a social model perspective.

Disability Self-Worth and Positive Personal Meaning in Disability: Correlates of Hope Among U.S. Residents With Physical Disabilities

Research is beginning to indicate that positive disability identity is associated with positive psychosocial outcomes among people with disabilities. Personal disability identity (PDI) refers to self-concept as a person with a disability. Two studies were conducted to examine (a) the psychometric properties of new PDI subscales and (b) the association between the new subscales and hope, a cognitive motivational construct. In Study 1, the author examined the structural validity and internal consistency of recently developed measures of PDI (i.e., disability self-worth and personal meaning in disability) in a sample of 247 adults with physical and sensory disabilities. In Study 2, the author examined the association between the two PDI subscales and hope (i.e., pathways and agency) in a subsample of 147 U.S. residents. In Study 1, internal consistency of all instruments was supported and confirmatory factor analyses supported the structural validity of the PDI subscales in a sample representing a broader disability subgroup than the original measurement development study, which had exclusively examined adults with visual impairment and blindness (Zapata, 2019). In Study 2, findings from hierarchical linear regression indicated that scores on disability self-worth and personal meaning were significantly and positively associated with hope scores ( p < .001), after accounting for demographic and disability characteristics. Study 1 found preliminary evidence to support the use of two new PDI subscales (i.e., disability self-worth and personal meaning) in academic research among adult U.S. residents with physical and sensory disabilities. Study 2 introduced disability self-worth and personal meaning as predictors of hope. Given prior research on the relationship between hope and positive adjustment among people with disabilities, these findings contribute to the emerging literature on the predictive role of disability identity in positive life outcomes among adults with disabilities.

Disability affirmation and acceptance predict hope among adults with physical disabilities.

Positive disability identity has been proposed as a protective factor against disability-related stressors. Personal disability identity (PDI) refers to positive self-concept as a person with a disability. The most widely used measure of PDI captures disability affirmation and disability acceptance (Hahn & Belt, 2004). The current study examined the association between PDI (i.e., acceptance and affirmation) and hope (i.e., pathways and agency). Hope is defined as a process of thinking about one's goals, including motivation to pursue goals (agency) and ways to achieve goals (pathways; Snyder et al., 1991). One hundred eighty-six adults with physical disabilities completed an online cross-sectional questionnaire measuring PDI, hope, personal factors, and impairment-related factors. Findings from multiple linear regression indicated that agency was predicted by both disability acceptance (p < .001) and disability affirmation (p < .001), after accounting for personal and impairment factors. Presence of multiple disabilities was also found to be negatively associated with agency (p = .001). Pathways was predicted by disability acceptance (p < .001) but not disability affirmation (p = .17), after accounting for personal and impairment factors. The regression model on agency explained 50% of the variance in agency scores, a moderate effect; the model on pathways explained 36% of the variance in pathways scores, a moderate effect. Internal consistency of all instruments was supported and confirmatory factor analyses supported the use of the PDI subscales. By introducing hope as a correlate of disability acceptance and disability affirmation, this study provides support for the role of disability identity in promoting well-being (e.g., agency and pathways) among adults with physical disabilities. (PsycInfo Database Record (c) 2020 APA, all rights reserved).

From Shelter to Emancipation: How Disabled Workers Found Their Own Voice Through Identity Work

While studies have examined individual and organizational identity work, we focus on the dynamic interplay between the two. Drawing on a six-year longitudinal study of disabled workers in a sheltered workshop in Germany, we show how the disabled found their own voice to be seen as active members of society and changed the organizational exclusionary identity of the workshop. We develop a process model with three different phases of “guided emancipation:” maintenance of identity constraints, external validation, and forging a new disability identity. Our findings advance our understanding of individual and organizational identity work processes in the workplace. First, engagement in purposeful identity work is not just performed by managers and leaders, but also by marginalized actors to empower themselves in an organization in which their role is highly constrained. Second, by illustrating the dynamic interplay between both individual and organizational identity work, we show how changes in individual identity work can precipitate an overall change in organizational identity. Third, we show how disabled workers engaged in identity work to change the socially constructed view of disability imposed on them by sheltered workshops as part of an institutionalized welfare system through expressing a positive disability identity based on their self-concept.

Disability Self-Identification and Well-Being in Emerging Adults

Research suggests that emerging adults (EAs) with a disabling impairment experience poor psychosocial outcomes and delayed markers of adulthood. Given the numbers of EA with a disabling impairment who do not self-identify as having a disability, we examine a multigroup structural model of positive disability identity based on disability self-identification. Participants ( n = 2,016) completed assessments of positive disability identity, psychosocial outcomes, and markers of adulthood. Most participants with a disabling impairment did not self-identify as having a disability (68%). Positive disability identity, maintaining a positive view of disability, was associated with increased life satisfaction, regardless of whether EA self-identify as having a disability. Exploratory analyses suggest that EA with psychiatric disabilities experience the most negative psychosocial outcomes. Findings suggest that maintaining a positive view of disability is associated with favorable outcomes. However, intervention with EA who do not self-identify is challenging, as they may not seek support services.

Positive Disability Identity Predicts Sense of Belonging in Emerging Adults With a Disability

Positive Disability Identity Predicts Sense of Belonging in Emerging Adults With a Disability

Who self-identifies as disabled? An examination of impairment and contextual predictors.

According to Social Identity Theory, minority group members, like people with disabilities, manage stigma by either "passing" as majority group members or identifying with their minority group. Approximately 15% of the world's population has a disability, but only a fraction of those individuals identify themselves as people with disabilities. Disability identification has been associated with positive outcomes including psychosocial well-being, self-advocacy, and political engagement. The International Classification of Functioning (ICF) recognizes that "disability" is constructed through the intersection of impairment and context (i.e., personal and environmental factors). This is the first study to examine ICF impairment factors (duration, noticeability, presence congenital impairment, pain, severity, and total number of impairments), personal factors (age, ethnicity, gender, income, and psychological distress), and environmental factors (social support and stigma) that predict disability self-identification. Research Method/Design: Participants living in the United States completed an online survey measuring the factors listed above. To avoid selection bias, disability was not mentioned in recruitment materials. Those who reported at least 1 impairment (n = 710) were retained for analysis. Supporting the ICF proposition that disability results from a combination of impairment and contextual factors, disability identification was predicted by severity, age, income, and stigma. Stigma partially mediated the relationship between severity and identification. Stigma and severity were the strongest predictors of disability identification. Future work should examine ways to foster positive disability identity such as cross-impairment connections through support groups, mentoring, and collective action against stigma. (PsycINFO Database Record

Un/covering: Making Disability Identity Legible

This article examines one aspect of disability identity among people with non-apparent or "invisible" disabilities: the decision to emphasize, remind others about, or openly acknowledge impairment in social settings. I call this process "un/covering," and situate this concept in the sociological and Disability Studies literature on disability stigma, passing, and covering. Drawing on interviews with people who have acquired a non-apparent impairment through chronic illness or injury, I argue that decisions to un/cover (after a disability disclosure has already been made) play a pivotal role for this group in developing a strong, positive disability identity and making that identity legible to others. Decisions to pass, cover, or un/cover are ongoing decisions that stitch together the fabric of each person's daily life experiences, thus serving as primary mechanisms for identity negotiation and management.

How We Label Students with Disabilities: A Framework of Language Use in an Urban School District in the United States

Although scientists have often overlooked the role of language used to refer to people with disabilities in their identities, language may reflect societal attitudes that are critical in shaping the experiences of people with disabilities, particularly during formative periods. International controversy surrounds disability-first versus people-first language, but little research to date has explored specific linguistic references to people with disabilities. This study draws on a content analysis of 22 qualitative interviews with students, parents, teachers, and administrators to explore language used to refer to students with disabilities. Results offer the first framework of language in a U.S. urban school district, including people-first, disability-implicit, and disability-first language. Results demonstrate noteworthy variation in form and content, and offer a values-based and contextual understanding of language. This nuanced way of understanding experiences of students with disabilities has implications for potentially improving language used to refer to people with disabilities, as well as creating a more positive disability identity.

How to support the needs of mothers with physical disabilities?

Purpose: The objectives of this study were: (1) to understand and describe the challenges that women with physical disabilities face during their motherhood process; (2) to understand and describe their strengths, and (3) to produce a list of supports that health professionals and policy makers should apply in order to address the needs of these mothers. Methods: The study was conducted within the phenomenological-constructivist paradigm. In-depth semi-structured interviews were conducted with 17 mothers age 32–62 with various physical disabilities. Results: The findings revealed both physical and mental challenges that these women have faced during their motherhood. Although these challenges, the women evaluated that motherhood, in the context of disability, helped them to develop positive disability identity, to frame and accept their interdependence and to become resilient. Their disability also influenced the children, i.e. they have learned how to cope with difficulties. The mothers recommended making the environment more accessible for them, providing physical and emotional support, parental guidance, information about their rights, and financial benefits to meet their children's needs. Conclusions: Mothering with a disability can result in personal growth, but this positive process requires interdependence, creative and collaborative approach applied in rehabilitation practices.Implications for RehabilitationSupporting mothers with physical disabilities should address not only their physical needs but also their mental and social needs. In particular, mothers with physical disabilities want and need parental guidance as well as accessible recreational activities for them and their children.An interdependence and creative approach should be applied in rehabilitation practices in a way that recognizes the right of women with physical disabilities to become mothers, express their needs and develop solutions in collaboration with health professionals.Health professionals should look for strengths of mothers with physical disabilities and use their strengths to accomplish personal aims within individual rehabilitation programs.