Disability Studies Commons^™

“When I’M Not Heard, I Feel Like I Don’T Matter”: Advancing Equity In Disability Policy Through Critical Participatory Action Research With People With Intellectual Disability, Cris Marchionne

Student Theses

People with intellectual disability deserve a system that offers flexible, timely, and person-centered support — one that is innovative, sustainable, and holistic in enabling them to live fulfilling lives. This qualitative study, grounded in Critical Participatory Action Research (CPAR), examines how people with intellectual disability experience participation in decision-making within New York State's disability service system. By centering lived experience, the study identifies factors that facilitate or hinder participation in decision-making and examines structural, social, and policy-related barriers that limit agency. Through six focus groups and a Photovoice project with self-advocates receiving OPWDD services, participants described systemic barriers that limited …

A Critical-Constructivist Grounded Theory Exploration Of The Mental Health Experiences Of Individuals With Intellectual Disabilities In Post-Secondary Settings, Alyssa L. Decker

Dissertations, 2020-current

Individuals with intellectual disabilities (ID) now have access to higher education, often through inclusive post-secondary education programs (IPSE), to increase employability and quality of life. IPSE programs, historically, have provided academic and life skill support and not mental health support within programs’ curricula. A recent review of IPSE programs reveals that if mental health services are included, they are often accessed through university health services. Transitioning from high school to college induces high levels of stress, which can exacerbate underlying mental health conditions. Mental health care is defaulted to an already overburdened college counseling center without the knowledge and skills …

Access Intimacy In The Feminist Classroom: Co-Creating Course Policies, Expectations, And Access Measures As Feminist Disability Praxis, Krystal Cleary

Feminist Pedagogy

In this essay, I outline an activity to foster access intimacy (Mingus, 2011) in the feminist classroom through students’ co-creation of course policies, expectations, and additional access measures. This activity transforms the classroom into a praxis laboratory wherein students analyze the normative structures that shape their hyperlocal classroom context and practice building environments characterized by interdependent solidarity rather than atomized competition. As feminist disability praxis, this activity centers the knowledge of disabled, chronically ill, and neurodivergent scholars and students; in doing so, it customizes the classroom to a diversity of learners and builds adaptability for responding to unforeseen challenges into …

Our Children Are Sacred: Faith, Disability Justice, And Educational Hope, Charles E. Becknell Jr., Pricella Morris, Monique Matute-Chavarria, Deirdre A. Williams

The Journal of Faith, Education, and Community

This manuscript examines how Black families interpret dis/ability through faith, caregiving, and communal life using Sacred Narrative Inquiry (SNI), a collaborative approach that treats family stories as sources of sacred and cultural knowledge. Grounded in disability theology and informed by Black liberation theology and Womanist epistemology, the study explores how families understand dis/ability as sacred and embodied, shaped by struggle, endurance, and hope. Through shared storytelling and collective interpretation, the analysis identifies recurring patterns of early moral formation, embodied knowledge that precedes institutional recognition, faith as a sustaining practice under constraint, and moments of recognition that affirm dignity and interrupt …

Collaboration Is Key: Improving And Increasing Inclusive Programming Through Partnership, Brandy D James, Elizabeth Sparks, Fiona S Davey, Burris Duncan, Nadine Chau

Journal of Extension

Collaborative partnerships between Cooperative Extension offices and the University Centers for Excellence in Developmental Disabilities are a key opportunity to assess and improve accessible, inclusive programming for the communities they serve. This article outlines such a partnership between local Extension, the local UCEDD, and the local Network for Down Syndrome. It reviews their collaborative process and the resulting pilot program—-an inclusive cooking class. Evaluations of the program and collaborative process demonstrate that the partners' collaboration enabled organizational capacity building and improved service provision for persons with Down Syndrome.

“Pride Runs Through Our Veins”: A Qualitative Investigation Of Black Parents’ Ethnic-Racial Socialization Practices Among Black Youth With Disabilities, Nicole A. Telfer, Danielle J. Allen, Noreen Yazejian, Iheoma U. Iruka

Developmental Disabilities Network Journal

While ethnic-racial socialization (ERS) practices are crucial in Black/African American families, little is known about ERS practices in Black families of Black children with disabilities. In the current study, we investigated ERS practices among Black/African American parents’ who are raising children with disabilities and how this may influence children’s outcomes. A total of N = 8 Black/African American parents were invited for semi-structured interviews to explore more deeply their ERS practices among their children with disabilities. Several themes emerged from the data, which highlights ERS practices from a DisCrit lens, as well as the overall experiences of parents and their …

Advocating For A Care-Based Ethic: Stories Of Pregnancy And Birth From Caregivers Of Children With Down Syndrome, Lydia Ocasio-Stoutenburg, Nayma Sultana Mim

Developmental Disabilities Network Journal

Down syndrome (DS) impacts about 1 in every 640 childbirths in the United States. While quality of life has improved for people with DS, systemic inequities and deficit-based perceptions have persisted throughout history, with material impacts on people with DS and their caregivers. Researchers have documented how caregivers of children with DS have had negative experiences with healthcare providers and genetic counselors, whose biased views about DS translate into subtle and overt pressures. Few studies explicitly focus on the experiences of Caregivers of Color, multilingual families, as well as families with varying economic experiences who have children with DS. This …

Independent Living Skills For The Aging Population Of Adults With Disabilities, Sara K. Fetter Otd, Otr, Jennifer L. Martin Otd, Otr, Cht, Clt, Michele L. Mccarroll Phd, Faacvpr, Acsm-Ccep, Ccrp, Lssbb

Developmental Disabilities Network Journal

Adults with intellectual disability (ID) are living longer and increasingly outlive family caregivers. Strengthening independent living and vocational skills has therefore become a critical public-health priority. Occupational therapy (OT) can address this need through person-centered, community-based programming. This paper describes the co-design, delivery, and preliminary outcomes of a short occupation-based curriculum intended to enhance autonomy and work readiness in aging adults with ID. In partnership with a Dallas, Texas nonprofit, the authors conducted a needs assessment and created an 8-session course rooted in the Independent Living Model and the Occupational Competence Model. The curriculum addressed four domains (physical health, financial …

From Crip Time To Care Time: How Library Administrators Can Support Professional Development Of Disabled Employees, Leah T. Dudak, Rhys Dreeszen Bowman Dr.

School of Information Studies - Post-doc and Student Scholarship

Building on our 2025 In the Library with the Lead Pipe article "Cripping Conferences", this piece moves from naming the problem to offering solutions to library administrators. Disabled library workers face significant barriers to professional development, including the financial cost of attendance, the physical and mental toll of navigating inaccessible spaces, and the conflict between crip time and the neoliberal clock time that governs academic and library culture. While accommodations are needed, they are not enough; we need to interrogate the systems that exclude disabled employees. Written by two disabled LIS scholars, this piece offers library administrators practical guidance, from …

Engaging Immigrant Families Of Children With Disabilities: Recommendations For Practitioners, Robai N. Werunga, John William Mckenna, Rocio Rosales

Developmental Disabilities Network Journal

Family involvement is essential for positive school outcomes. Yet research suggests that family engagement for students with disabilities may be marked by conflict. Furthermore, creating an environment that promotes active engagement for immigrant families may be challenging. In this paper, we synthesize existing research, legal guidance, and community-engaged insights to present four practice-oriented recommendations for educators and practitioners working with immigrant families of children with disabilities. Grounded in Hans and Love’s stages of immigrant family engagement, these recommendations aim to support meaningful and culturally responsive participation in special education processes.

Sermon On The Spectrum, Jan A. Wozniak

Ought: The Journal of Autistic Culture

No abstract provided.

Living Through Misinformation: An Autoethnography Of Autism In Chinese Communities, Joy Lu

Ought: The Journal of Autistic Culture

This critical autoethnographic essay examines how misconception, misinformation, and disinformation shape understandings of autism within Chinese communities and produce tangible harm for autistic individuals and their families. Drawing on lived experience, advocacy work, digital observation, and cross-cultural analysis, it explores how language, medical practices, social media, and professional authority sustain persistent misrepresentation.

The essay argues that this misinformation is not merely the result of ignorance, but a socially reinforced and institutionally supported system of knowledge. By situating personal encounters within broader cultural and structural contexts, it highlights the interconnected roles of language, power, and exclusion in shaping autistic lives. It …

When Distress Is Misread: Autistic Credibility And The Politics Of Interpretation, Katrine Callander

Ought: The Journal of Autistic Culture

Misinformation about autism is often understood as a problem of inaccurate facts, stereotypes or public misunderstanding. This essay argues that misinformation also operates through dominant interpretive frameworks that shape how autistic experiences are recognised, understood and believed. Drawing on participatory narrative research with autistic women, the essay examines how institutions frequently reinterpret experiences of harm as personality dysfunction, emotional instability or individual deficit rather than recognising them as relational and socially produced. Autistic forms of communication and storytelling are often treated as signs of unreliability, shaping whose accounts are considered credible within clinical and institutional contexts. By reframing these patterns …

Misinformation Machine, Jan A. Wozniak

Ought: The Journal of Autistic Culture

No abstract provided.

Reclamando Corazón Y Voz: Latinas Speak Their Truth Through Plática As Resistance In California Community College Learning Disabilities Assessments, Maricela Becerra

Dissertations

Although California Community Colleges (CCCs) offer learning disability (LD) assessments to determine eligibility for academic accommodations, for Latina students navigating converging forces of race, gender, language, citizenship, and ableism, these assessments often surface unspoken histories of harm. This study advanced Chicana feminista DisCrit (CFDC), extending disability critical race theory through Chicana spirituality and cultural intuition to examine possibilities when an educadora situates assessments in a plática grounded in consideración—respectful, relational, and unhurried care.

Rooted in Chicana feminist pláticas methodology and authored from the positionality of a disabled Latina scholar–practitioner, this qualitative decolonial dissertation explored how Latina students reflected on …

Who Gets To Be Taken Seriously? Three Atypical Scholars Navigate Doctoral Education At The Intersections Of Race, Neurodivergence, And Veteran Identity, Sr. Richard De La Garza

Dissertations

As a first-generation, neurodivergent, Mexican American/Chicano veteran, I entered the University of San Diego's doctoral program having had experiences that most institutional intake processes would label as risk factors. The Findings chapter of this dissertation begins by describing those experiences—not as a confession, but as the foundation for a systematic inquiry into how doctoral legitimacy is produced, withheld, and defended. The description of my life experiences is followed by a discussion of the doctoral journeys of two other study participants who also were atypical doctoral candidates.

The central argument being advanced is this: What higher education calls "fit," "rigor," and …

An Equity-Based And Culturally Responsive Bill Of Rights For Early Childhood Students Of Color With Exceptionalities, Evette Simmons-Reed, Michelle Frazier Trotman Scott, Gloria Tardash, Mildred Boveda, Donna Y. Ford

Perspectives on Early Childhood Psychology and Education

The COVID-19 pandemic exacerbated existing disparities in early intervention (EI) and early childhood special education (ECSE) services for culturally and linguistically diverse (CLD) disabled children, exposing critical gaps in access, services and support. systemic inconsistencies in implementation, training, and funding, remain barriers limit opportunities for CLD students to benefit, despite the aims of the Individuals with Disabilities Improvement Act (IDEA). To address these inequities, this manuscript proposes an expanded and updated Culturally Responsive Equity-Based Bill of Rights for EI and ECSE. Building upon Ford and colleagues' (2018) work, this revised document extends protections to children aged zero to five, emphasizing …

Guest Editor's Introduction: Methodological Innovations For Advancing Early Childhood Educational And Psychological Research, Anthony Mangino Ph.D.

Perspectives on Early Childhood Psychology and Education

The goal of this special issue is to provide you, the inquisitive reader and developmental scientist, with some of the methodological tools to aid in augmenting your analytic capacity.

The Legacy Of Lead: Lead Exposure's Harmful Effects And Its Concentration In Poc Communities, Layla Sophronia Barber

Student Theses 2015-Present

This thesis examines the disproportionate burden of lead exposure carried by low income, POC communities. The systemic nature of this problem is a symptom of a longstanding legacy of environmental injustice in the United States. Decades of federal neglect are reflected in the higher statistics of lead exposure and poisoning in predominantly black communities. While it is understood that lead exposure poses a serious threat to physical health and early cognitive development, there is a discouraging lack of urgency to remove the toxin from non-wealthy communities. The material covered by this thesis aims to identify and correct the discriminatory social …

Cripping The Border – Acompañamiento As Access: An Ethnographic Case Study Of Transborder Youth With Disabilities, Marco O. Amaral

Dissertations

The U.S.-Mexico border is a historical, geopolitical site of intense militarization where colonial logics of "othering" converge to marginalize disabled transborder youth. While transborder studies have expanded, students with disabilities remain relegated to the "void" and contained by educational systems that prioritize surveillance over access. Grounded in Sepúlveda’s (2011) acompañamiento and Transborder DisCrit, this ethnographic case study examines the lived experiences of both students and their families who cross the border daily to attend school in the U.S. It frames these journeys not as mere commutes, but as acts of defiance within the broader disability rights movement.

As a teacher-activist, …

Evaluating The Impact Of A Lend-Based Family Mentorship Program For Pre-Service Professionals, Matthew Bogenschutz, Sarah Lineberry, Jackie Robinson Brock, Flip Grey, Kathryn Flinn

Developmental Disabilities Network Journal

Family-led pre-professional mentoring programs have been shown in past literature to have multiple positive outcomes, including better provider communication, increased sensitivity to the needs and contributions of family members in clinical settings, and better understanding of disability policy contexts among professionals. Yet there have been relatively few examples of exemplary programs that have developed successful models for family mentoring of pre-service professionals. Using qualitative evaluative data from one such program, a component of a Leadership Education in Neurodevelopmental and Related Disabilities (LEND) program, this study shares the experiences of both families and trainees. Common themes shared between these two groups …

Parents’ Lived Experiences With Competitive Integrated Employment For Children With Intellectual And Developmental Disability, Dr. Aisha J. Omar

Developmental Disabilities Network Journal

This phenomenological qualitative study explores the lived experiences of Kentucky parents seeking Competitive Integrated Employment (CIE) for their children with intellectual and developmental disabilities (I/DD). Guided by the research questions—How do parents experience this process, and what barriers or supports do they encounter?—the study highlights systemic challenges despite legislative efforts such as the Americans with Disabilities Act and the Workforce Innovation and Opportunity Act. In-depth interviews with five parents revealed three themes: (a) parental transformation and the pursuit of meaningful work, (b) systemic challenges in accessing CIE, and (c) overcoming protective instincts: navigating fear, independence, and self-advocacy. Findings suggest a …

Children And Youth With Special Health Care Needs (Cyshcn) Regional Support Centers (Rsc): A Framework For Effectively Engaging Stakeholders, Jenna Lequia, Susan Burlazzi, Abby Beer, Miriam Franco, Kathleen Mcgrath, Angel Morales, Joanne Siegel, Susan Hetherington, Tricia Patrick

Developmental Disabilities Network Journal

The three University Centers for Excellence in Developmental Disabilities (UCEDDs) in New York served as Children and Youth with Special Health Care Needs (CYSHCN) Regional Support Centers (RSC). The RSCs aimed to increase the capacity of local CYSHCN programs to connect with and support CYSHCN and their families in their community. RSCs conducted activities in the areas of family engagement, training and educational materials development, and technical assistance. RSCs engaged in ongoing dialogue with CYSHCN and their families to learn about experiences to inform systemic improvements through focus groups, interviews, and surveys. This article describes a statewide framework to serve …

Good Mothers: Black Disabled Mothers & The Family Policing System, Siobhan Pokorney

Dissertations, Theses, and Capstone Projects

Good Mothers: Black Disabled Mothers & the Family Policing System is a qualitative study utilizing 16 in-depth individual interviews with mothers who broadly identified as Black, disabled mothers who had at least one interaction with the family policing system as adults in or around NYC. The study examines the work these mothers engage in to navigate their identities and strategically present themselves as good mothers while facing state surveillance and oppressive systems (specifically the family policing system) which automatically frame them as “unfit mothers.” It traces their experiences and the identity work that they engage in through the anticipatory trauma …

Los Sistemas De Apoyo Para Personas Indígenas Con Discapacidad Como Garantía De Derechos Lingüísticos Y Justicia Epistémica En México, Antonio R. Uc Galera

Journal of Maya Heritage

La derogación formal de la figura de interdicción consagrada en los Códigos Civiles Sustantivos y la implementación de figuras jurídicas novedosas como sistemas de apoyo y personas, representa de los avances más trascendentes en materia de discapacidad. Su aplicación legislativa impacta a las personas de las Comunidades Indígenas con discapacidad como garantía de derechos sus lingüísticos, ya que estas nuevas figuras jurídicas en materia civil brindan herramientas de comunicación, apoyos cognitivos y de comprensión, incluyendo lectura fácil, implementación de traductores, instrumentos que apoyan la movilidad, entre otros, según las necesidades de la persona en particular. Este artículo propone un análisis …

The Indispensable Role Of The Sister Disability Agencies: Safeguarding Progress And Enhancing Outcomes Through Collaboration, Lesley Cottrell, Susan Given, Christina E. Wiseman

Developmental Disabilities Network Journal

This manuscript emphasizes the critical importance of having a Disability Network of services—including University Centers for Excellence in Developmental Disabilities (UCEDDs), State Councils on Developmental Disabilities, and Protection & Advocacy organizations - in promoting systemic innovation and improved outcomes for individuals with developmental disabilities. Highlighting a case study from West Virginia, where collaboration between West Virginia University’s Center for Excellence in Disabilities, Disability Rights of West Virginia, and the West Virginia Developmental Disabilities Council has resulted in cost-effective, sustainable improvements, this paper underscores the urgent need to protect and expand these programs amidst current policy threats. The evidence underscores that …

Increasing Participation Through Online Focus Groups With Adults With Intellectual Disabilities, Emily L. Cary, Chris A. Taylor, Susan Havercamp, Andrea Witwer

Developmental Disabilities Network Journal

The aim of this study was to develop and describe methods on how to conduct virtual focus groups with adults with intellectual disability. Using a community-engaged research approach, adults with intellectual and developmental disabilities helped develop virtual focus group methods. We report on the implementation of these methods through an illustrative application of applying these adaptations to virtual focus groups with 13 adults with intellectual disability in a study assessing their perspectives on mental health therapy.

This work resulted in several adaptations that can enhance inclusivity of focus group research to individuals with intellectual disability. Adaptions broadly included: involving guardians …

Training On "Learn The Signs. Act Early." In Head Start And Early Head Start Shows Ineffective Without Supporting Implementation Policy, Kayla Livingston, Mary O'Donnell, Kate G. Barlow

Developmental Disabilities Network Journal

Early identification and intervention for children with developmental delays improves child outcomes, yet many children are not monitored, screened, or identified early despite its effectiveness. The relationship between the use of the Centers for Disease Control and Prevention’s “Learn the Signs. Act Early.” developmental monitoring program and referrals to intervention services is not well understood. This study investigated how “Learn the Signs. Act Early.” implementation practices within Massachusetts’ Head Start and Early Head Start agencies correlated with the rate of referrals to intervention services. Researchers utilized a non-experimental quantitative design. Secondary data on referral rates from Head Start and Early …

Educating Medical Trainees On Mental Healthcare And Intellectual And Developmental Disabilities, Andrea Palmieri, Joan B. Beasley, Micah Peace Urquilla, Jennifer Mclaren

Developmental Disabilities Network Journal

Many children and adults with intellectual and developmental disabilities (IDD) experience mental health conditions and commonly receive treatment with psychotropic medications. Prescribers often overuse these medications in children with IDD, who are frequently treated with polypharmacy and antipsychotics, a trend that continues into adulthood. Medical trainees receive little training regarding the IDD patient population. This paper describes the development and evaluation of an evidence-informed, easy-to-use training curriculum. The 6-hour training establishes a foundation for medical trainees regarding the treatment of mental health conditions in people with intellectual and developmental disabilities (IDD-MH) as part of an integrated health, interdisciplinary treatment approach. …

“I Don’T Want To Be The Bad Kind Of Special”: The Lived Experiences Of Autistic Youth In Extracurricular Programs In Their Communities, Catherine A. Sargent Ph.D.

Counseling and Psychology Dissertations

Autistic youth face barriers to participation and belonging in community settings. Historically, autism research has privileged researcher perspectives and deficit-based frameworks, often excluding the authentic voices of autistic individuals, particularly young people. This qualitative, phenomenological study sought to address that gap by exploring the lived experiences of autistic youth (ages 13–18) participating in extracurricular community programs in Massachusetts. Framed by critical disability theory, critical autism studies, ecological systems theory, and intersectionality, the study examined how autistic youth experience inclusion, connection, and self-expression within programs designed largely for neurotypical participants.

Seven autistic youths contributed to this research through participant-generated photographs and …