1 Introduction to Disability Studies

In this chapter, you will be exploring and learning about the concepts and vocabulary associated with services for individuals with disabilities. This resource introduces you to the federally mandated policies and procedures for identifying and educating students with exceptionalities. In Chapter 1, your exploration will focus on learning about why we serve diverse students in our schools in the manner that we do. You will learn about the historical treatment of individuals with disabilities and how it changed over time. You will also learn that the perceptions of individuals with disabilities (and how those perceptions translated into their treatment by society) have changed with the economic, political, and cultural times. Finally, you will expand that concept to include individuals from diverse backgrounds.

Disability Studies

Disability studies is an interdisciplinary field that examines disability as a social, cultural, and political phenomenon. It represents a shift away from viewing disability through a solely medical lens and, instead, explores how societal attitudes, environments, policies, and structures disable people with impairments (Linton, 1998). By taking a critical look at concepts of normalcy, ableism, accessibility, identity, and representation, disability studies challenges conventional notions and advocates for the rights and dignity of those with disabilities. At its core, disability studies is grounded in the social model of disability, which argues that disability arises from the interaction between an individual’s impairments and the physical and attitudinal barriers present in society. It distinguishes between a person’s impairment and the disabling effects of an inaccessible environment and stigmatizing attitudes. Through this lens, the “problem” of disability results not from an individual’s condition but from a failure of society to accommodate and include people with different abilities. In contrast, the previously dominant medical model treated disability as a personal deficiency requiring treatment or cure.

In exploring disability identity and culture, disability studies celebrates disability as a natural part of human diversity, not a personal tragedy. It examines how disability intersects with other aspects of identity like race, gender, sexuality, and class (Garland-Thomson, 2005). Person-first language and identity-first language are two approaches to describing individuals with disabilities, each with its own philosophical underpinnings and implications for promoting respect and dignity. Person-first language emphasizes the individuality and humanity of the person before their disability, placing the person ahead of the condition. For example, instead of saying “disabled person,” person-first language advocates for “person with a disability.” The rationale behind person-first language is to emphasize the personhood of individuals and avoid reducing them to their disability (Dunn et al., 2018). It aims to promote inclusivity, reduce stigma, and foster a positive and respectful attitude towards individuals with disabilities. On the other hand, identity-first language prioritizes the disability as an integral part of the individual’s identity. For example, instead of saying “person with autism,” identity-first language advocates for “autistic person.” This approach acknowledges that disability is an inherent aspect of an individual’s identity and may shape their experiences, perspectives, and sense of self (Kenny et al., 2016). Identity-first language is often embraced by disability rights activists and advocates within the disability community who view disability as a natural and valued aspect of diversity. Both person-first and identity-first language have their proponents and critics, and preferences may vary among individuals and communities. Some argue that person-first language upholds the principles of respect and dignity by prioritizing the individual over the disability, while others assert that identity-first language empowers individuals to embrace their disability as an integral part of who they are (Kenny et al., 2016; Dunn et al., 2018). In practice, it is essential to respect individuals’ preferences regarding how they wish to be described and to use language that reflects their self-identification and autonomy. Ultimately, the goal is to promote understanding, acceptance, and inclusivity, while centering the voices and experiences of individuals with disabilities.

From a policy standpoint, disability studies has brought greater recognition to disability rights as human rights. It advocates for accommodations, assistive technologies, inclusive design, independent living, and full societal participation as issues of equality rather than charitable care (Charlton, 1998). The landmark Americans with Disabilities Act of 1990, influenced by the disability rights movement, reflects this philosophy of ensuring access and prohibiting discrimination against people with disabilities in areas like employment, public accommodations, and government services. Overall, disability studies represents a powerful shift in how we view and approach disability – from a deficit-based, medical perspective to an affirmative model celebrating human diversity, rights, and societal belonging (Ferguson & Nusbaum, 2012). Its insights can create more inclusive, equitable, and accommodating communities for people of all abilities.

Historical Overview

The history of how individuals with disabilities have been viewed and treated in the United States has been quite the journey, with periods of progress alternating with times of regression and discrimination. One of the earliest eras of reform began in the early 19th century from 1800-1860. Influenced by Enlightenment philosophies and early medical advancements, pioneers like Thomas Gallaudet, Samuel Gridley Howe, and Edouard Seguin started the nation’s first schools for students with disabilities (Winzer, 1993). Their work reflected a shift in attitudes – whereas disability had previously been seen as a qualitative difference making someone less human, reformers argued it was more a quantitative variation in ability that could be improved through appropriate education and nurturing (Teleford & Sawrey, 1982).

However, this early progress was followed by a long period of stagnation and regression from 1860-1950. Theories of social Darwinism, eugenics, and the rise of intelligence testing re-cast individuals with disabilities as threats to society (Trent, 1994). Disability was once again viewed as a  “defect” marking those who should not be educated or allowed to reproduce (Carey, 2009). This climate enabled unethical practices like forced institutionalization and involuntary sterilization. It was not until after World War II and the horrors of the eugenics movement that public opinion and policies began to change again. The contemporary reform era from 1950 to the present saw advocates expose the dehumanizing conditions faced by those with disabilities (Carey, 2009; Blatt & Kaplan, 1974). Finally, outcomes of litigation and the Individuals with Disabilities Education Act (IDEA) established access to public education as a civil right.

Throughout these eras, a few key themes emerged: how society treats those with disabilities tends to follow broader cultural trends (Wolfensberger, 2011); conceptions oscillate between seeing disability as a quantitative or qualitative difference (Teleford & Sawrey, 1982); prevailing philosophies emphasize nature (genetics) or nurture (environment) (Winzer, 1993); and periods of reform are frequently followed by periods of retrenchment – the “new” is not necessarily better than the “old” (Kauffman, 1999). Ultimately, while the recent era has secured significant legal protections, the complexity of this history shows that rights and inclusion for individuals with disabilities should never be taken for granted. Continued advocacy, empathy, and commitment o educational opportunity regardless of ability level are essential to honoring human dignity and potential. Understanding the hard-fought battles of the past equips us to uphold and further the vital reforms achieved for people with disabilities.

Advocacy has played a pivotal role in promoting the rights, inclusion, and empowerment of individuals with disabilities. Disability advocacy encompasses a range of activities aimed at advancing the rights and interests of individuals with disabilities, encompassing a range of activities aimed at advancing the rights and interests of individuals with disabilities (Oliver, 2013). Advocates have worked tirelessly to challenge discrimination, promote accessibility, and foster inclusive practices across various domains, including education, employment, healthcare, and community participation. Effective disability advocacy has elicited change thanks to strategic planning for policy change, collaboration among parents and stakeholders, and persistence. Advocates have utilized various strategies, such as grassroots organizing, public awareness campaigns, coalition-building, and legislative lobbying, to raise awareness, mobilize support, and influence decision-makers. Leveraging media, social networks, and digital platforms have amplified advocacy efforts and reach broader audiences.

Disability advocacy has led to significant advancements in policy, legislation, and practice, enhancing the rights and opportunities of individuals with disabilities (Bagenstos, 2019). Landmark laws such as the Americans with Disabilities Act (ADA) and the Individuals with Disabilities Education Act (IDEA) were achieved through persistent advocacy efforts, with parents of children with disabilities leading the way. Advocacy has also contributed to the development of inclusive education practices, accessibility standards, and disability rights protections worldwide. Despite progress, disability advocacy faces ongoing challenges, including systemic barriers and stigma. Disability advocacy is a powerful force for promoting social justice, equity, and inclusion. By amplifying the voices of individuals with disabilities, challenging systemic barriers, and advocating for policy change, advocates contribute to creating a more accessible, inclusive, and equitable society for all.

Four decades ago, Judith Heumann helped to lead a groundbreaking protest called the Section 504 sit-in, in which disabled-rights activists occupied a federal building for almost a month, demanding greater accessibility for all. In this personal, inspiring talk, Heumann tells the stories behind the protest and reminds us that, 40 years on, there’s still work left to do.

What is Special Education?

Special education is a field dedicated to providing tailored support and services to individuals with diverse learning needs. Special education encompasses a wide array of strategies, services, and programs designed to address the unique learning requirements of individuals with disabilities or exceptionalities. It focuses on ensuring equitable access to education and fostering the academic, social, and emotional growth of all students. Key legislation, such as IDEA and ADA, provides the legal framework for special education. These laws mandate the provision of free and appropriate education, outline rights and protections for students with disabilities, and emphasize the importance of inclusive practices (Turnbull et al., 2020).

The precise term of special education within federal law is defined as “special designed instruction, at no cost to parents, to meet the unique needs of a child with a disability, including: (a) instruction conducted in the classroom, in the home, in hospitals and institutions, and in other settings; and (b) instruction in physical education” (Individuals with Disabilities Education Act; 20 U.S.C. §1401[29]). While special education teachers have the primary responsibility for this specially designed instruction, general education teachers, paraeducators, specialists, and other professionals also contribute to providing special education services. It is a team effort!

The second component of special education includes the provision of related services, defined as: “transportation, and such developmental, corrective, and other supportive services (including speech-language pathology and audiology services, interpreting services, psychological services, physical and occupational therapy, recreation, including therapeutic recreation, social work services, school nurse services designed to enable a child with a disability to receive a free appropriate public education as described in the individualized education program of the child, counseling services, including rehabilitation counseling, orientation and mobility services, and medical services, except that such medical services shall be for diagnostic and evaluation purposes only) as may be required to assist a child with a disability to benefit from special education, and includes the early identification and assessment of disabling conditions in children” (Individuals with Disabilities Education Act; 20 U.S.C. §1401[26]). These supports are specifically designed to enable students with disabilities to access instruction and benefit from all educational services provided. The Individualized Education Program (IEP) team works together to decide which related services are needed for individual students.

A third component of special education services includes supplemental aids and services. The term “supplementary aids and services” refers to aids, services, and other supports that are provided in regular education classes or other education-related settings to enable children with disabilities to be educated with children without disabilities to the maximum extent appropriate in accordance with section 1412 (a)(5) (20 U.S.C. §1401[29]). Special education supplementary aids and services are essential components of providing inclusive education to students with disabilities. These aids and services encompass a wide range of supports designed to enable students to access the general education curriculum and participate fully in school activities. Supplementary aids and services include accommodations and modifications such as supports to address environmental needs, levels of staff support needed, specialized equipment, assistive technology, instructional pacing, presentation of subject mater, materials, assignment modifications, self-management supports, testing adaptations, social interaction support, and training needed for personnel. These interventions aim to address the unique learning needs of students with disabilities while promoting their academic and social success within inclusive settings. By providing tailored supports based on individualized education program (IEP) goals and student needs, educators can ensure equitable access to education and facilitate meaningful participation for all learners.

Diversity Issues in Special Education

The field of special education is tasked with providing appropriate supports and services to students with a wide range of disabilities and special needs. However, issues of diversity surrounding race, ethnicity, language, and socioeconomic status can create barriers to effectively serving all students. It is crucial for special education programs and professionals to be aware of and address these diversity issues.

One major diversity challenge is the over-representation of minority students, particularly Black and Hispanic students, in special education programs. According to data from the U.S. Department of Education (click the hyperlink to access most up-to-date data), in the 2019-2020 school year Black students were 1.48 times more to receive special education services for an intellectual disability and 1.30 times more likely to receive special education services for an emotional disturbance compared to all students with disabilities. Of equal concern, American Indian or Alaskan Native students were 2.4 times more likely to receive special education services for a developmental delay compared to all students with disabilities (U.S Department of Education, 2021). This disproportionate representation raises concerns about potential biases in the referral, assessment, and placement processes.

English learners (ELs) with disabilities represent a unique population requiring specialized support to address both their language acquisition needs and their educational challenges related to disabilities. Research indicates that ELs are overrepresented in special education programs, potentially due to factors such as language barriers, cultural differences, and limited access to appropriate assessments and interventions (Artiles & Ortiz, 2002). Identifying and addressing the educational needs of ELs with disabilities requires a comprehensive understanding of language development, cultural factors, and disability characteristics to ensure equitable access to quality education (García & Ortiz, 2008). Collaboration among educators, language specialists, special education professionals, and families is essential for implementing effective instructional strategies, providing culturally responsive supports, and promoting the academic success of ELs with disabilities.

Inappropriate assessment practices can contribute to misidentification of students from diverse backgrounds as having disabilities. The intersection of language learning and special education presents unique challenges in assessment, identification, and service delivery for ELs with disabilities. Standardized assessment tools may not adequately capture the abilities and needs of ELs, leading to potential misdiagnosis or underrepresentation in special education programs (Artiles et al., 2005). Many assessment tools were originally designed and normed for White, English-speaking populations, which can lead to inaccurate results when used with students from different cultural, linguistic, and socioeconomic backgrounds (Skiba et al., 2008). Culturally and linguistically responsive assessment practices, including dynamic assessment and observation-based assessments, can provide a more accurate understanding of ELs’ strengths and needs, leading to more appropriate interventions and supports (Abedi, 2007). Language barriers present another major obstacle for students from diverse backgrounds. According to the National Center for Education Statistics (click the hyperlink to access most up-to-date data), in 2020 about 10% of public school students were English language learners (ELLs; NCES, 2023). These students may struggle academically due to limited English proficiency, putting them at higher risk of being inappropriately placed in special education. Incorporating language and cultural considerations into IEPs and instructional practices is crucial for ensuring meaningful access and participation for ELs with disabilities in inclusive settings (Gottlieb et al., 2006).

Students from low-income households and those who have experienced trauma and adversity are disproportionately represented in special education (Morgan et al., 2015). Poverty, exposure to violence, homelessness, and other environmental factors can impact development and learning. Adverse Childhood Experiences (ACEs) refer to stressful or traumatic events occurring during childhood, which can have lasting impacts on physical, mental, and emotional well-being throughout the lifespan (Center for Disease Control and Prevention, 2023). ACEs may include abuse (physical, emotional, or sexual), neglect (physical or emotional), household dysfunction (such as substance abuse, mental illness, domestic violence, or parental separation), and other traumatic experiences.

Research has shown a strong correlation between ACEs and negative long-term outcomes across multiple domains. Individuals who experience ACEs are at increased risk for a range of health problems, including chronic diseases (such as heart disease, cancer, and diabetes), mental health disorders (such as depression, anxiety, and post-traumatic stress disorder), substance abuse, and risky behaviors (such as smoking, alcoholism, and unprotected sex) (Hughes et al., 2017; Merrick et al., 2018). Moreover, ACEs can adversely affect cognitive development, academic achievement, and socio-emotional functioning, leading to difficulties in relationships, employment, and overall quality of life (Center for Disease Control and Prevention, 2023). The cumulative impact of multiple ACEs, known as ACE score, is associated with a dose-response relationship, meaning that higher ACE scores correlate with greater risk of adverse outcomes (Hughes et al., 2017). Understanding the prevalence and impact of ACEs is crucial for informing prevention and intervention efforts aimed at mitigating their effects and promoting resilience among children and families. Trauma-informed approaches, early intervention programs, and supportive services that address the underlying causes of ACEs and provide trauma-sensitive care can help buffer the negative consequences and promote positive long-term outcomes for individuals affected by childhood adversity.

To promote equity, special education must adopt culturally responsive and trauma informed practices throughout the entire process – referral, assessment, program planning, and service delivery. This includes recruiting and training a diverse special education workforce that can support students from varied backgrounds. Family engagement and community partnership programs should be culturally and linguistically accessible. Overall, diversity issues in special education stem from complex, interrelated factors. Diligent efforts towards culturally competent policies and practices are essential for ensuring all students receive the appropriate services and supports they need to thrive.

Recommended Learning Modules Connected to Content

1. What Do You See? Perceptions of Disability. This module encourages students to explore their own attitudes and beliefs about people with disabilities. It highlights the abilities of individuals with disabilities (est. completion time: 1 hour).
2. Classroom Diversity: An Introduction to Student Differences. This module offers a broad overview of how diversity (i.e., culture, language, exceptionality, and socioeconomic status) affects learning and how teachers can better meet the needs of all their students in their classes (est. completion time: 1 hour).
3. Cultural and Linguistic Differences: What Teachers Should Know. This module examines the ways in which culture influences the daily interactions that occur across all classrooms and provides practice for enhancing culturally responsive teaching (est. completion time: 1 hour).
4. Dual Language Learners with Disabilities: Supporting Young Children in the Classroom. This module offers an overview of young children who are dual language learners. Further, it highlights the importance of maintaining children and families’ home language at the same time they are learning a new or second language, discusses considerations for screening and assessing these children, and identifies strategies for supporting them in inclusive preschool classrooms (est. completion time: 1.5 hours).
5. Teaching English Language Learners: Effective Instructional Practices. This module helps teachers understand second language acquisition, the importance of academic English, and instructional practices that will enhance learning for English Learners (est. completion time: 2 hours).
6. The Minnesota Governor’s Council on Developmental Disabilities (2024). Parallels in time: A history of developmental disabilities.

Additional Readings

1. Rossetti, Z., Sauer, J. S., Bui, O., & Ou, S. (2017). Developing collaborative partnerships with culturally and linguistically diverse families during the IEP process. TEACHING Exceptional Children, 49(5), p. 328-338.
2. Hsiao, Y., Higgins, K., & Diamond, L. (44). Parent empowerment: Respecting their voices. TEACHING Exceptional Children, 49(5). p. 43-53.

References

1. Abedi, J. (2007). English language proficiency assessment in the nation: Current status and future practice. The Regents of the University of California. https://education.ucdavis.edu/sites/main/files/ELP_Report.pdf 
2. Artiles, A. J., & Ortiz, A. A. (2002). English language learners with special education needs: Identification, assessment, and instruction. Center for Applied Linguistics and Delta Systems Co, Inc.
3. Artiles, A. J., Rueda, R., Salazar, J. J., & Higareda, I. (2005). Within-group diversity in minority disproportionate representation: English language learners in urban school districts. Exceptional Children, 71(3), 283-300.
4. Bagenstos, S. R. (2009). Law and the Contradictions of the Disability Rights Movement. Yale University Press.
5. Blatt, B., & Kaplan, F. (1974). Christmas in purgatory: A photographic essay on mental retardation. Human Policy Press: Syracuse, New York\
6. Carey, A. C. (2009). On the margins of citizenship: Intellectual disability and civil rights in twentieth-century America. Temple University Press.
7. Center for Disease Control and Prevention (2023). Adverse Childhood Experiences (ACES). https://www.cdc.gov/violenceprevention/aces/index.html
8. Dunn, D. S. & Andrews, E. E. (2018). Person‐first and identity‐first language: Developing psychologists’ cultural competence using disability language. American Psychologist, 70(3), 255-264.
9. Ferguson, P. M., & Nusbaum, E. (2012). Disability studies: What is it and what difference does it make? Research & Practice for Persons with Severe Disabilities, 37(2), 70-80.
10. García S. B., Ortiz A. A. (2008). A framework for culturally and linguistically responsive design of response to intervention models. Multiple Voices for Ethnically Diverse Exceptional Learners, 11(1), 24-41.
11. Garland-Thomson, R. (2005). Feminist Disability Studies. Signs, 30(2), 1557-1587.
12. Hughes, K., Bellis, M. A., Hardcastle, K. A., Sethi, D., Butchart, A., Mikton, C., Jones, L., & Dunne, M. P. (2017). The effect of multiple adverse childhood experiences on health: a systematic review and meta-analysis. The Lancet. Public health, 2(8), e356–e366.
13. Kauffman, J. M. (1999). The role of science in behavioral disorders. Behavioral Disorders, 24(4), 265-272.
14. Kenny, L., Hattersley, C., Molins, B., Buckley, C., Povey, C., & Pellicano, E. (2016). Which terms should be used to describe autism? Perspectives from the UK autism community. Autism: The International Journal of Research and Practice, 20(4), 442–462.
15. Linton, S. (1998). Claiming Disability: Knowledge and Identity. NYU Press.
16. Merrick, M. T., Ports, K. A., Ford, D. C., Afifi, T. O., Gershoff, E. T., & Grogan-Kaylor, A. (2017). Unpacking the impact of adverse childhood experiences on adult mental health. Child Abuse & Neglect, 69, 10–19
17. Morgan, P. L., Farkas, G., Hillemeier, M. M., Mattison, R., Maczuga, S., Li, H., & Cook, M. (2015). Minorities are disproportionately underrepresented in special education: Longitudinal evidence across five disability conditions. Educational Researcher, 44(5), 278-292.
    
18. National Center for Education Statistics (NCES). (May 2023). English Language Learners in Public Schools. https://nces.ed.gov/programs/coe/indicator/cgf
19. Skiba, R. J., Poloni-Staudinger, L., Gallini, S., Simmons, A. B., & Feggins-Azziz, R. (2006). Disparate access: The disproportionality of African American students with disabilities across educational environments. Exceptional Children, 72(4), 411-424.
20. Turnbull, A., Turnbull, H. R., Wehmeyer, M. L., & Shogren, K. A. (2020). Exceptional lives: Practice, Progress, & Dignity in Today’s Schools. Pearson.
21. Winzer, M. A. (1993). The history of special education: From isolation to integration. Gallaudet University Press.
22. Wolfensberger, W. (2011). Twenty predictions about the future of residential services in mental retardation. Intellectual and Developmental Disabilities, 49(6), 411-416.
23. Yell, M. (2019). The Law and Special Education. Pearson.
24. Yell, M., Rogers, D., & Lodge Rodgers, E. (1998). The legal history of special education: What a long, strange trip it’s been! Remedial and Special Education, 19(4), 219-228.