Social Inclusion Includes Disability

Self-advocacy refers to a person’s distinct ability to “communicate, convey, negotiate, or assert [one’s own] interests, desires, needs, and rights” (Stamp, Banerjee, and Brown, p. 142). For students living with disabilities, self-advocacy can be more narrowly defined as a keen understanding of one’s disability; legal rights guaranteed under the Americans with Disabilities Act (ADA), Americans with Disabilities Amendment Act (ADAAA),  the Rehabilitation Act of 1973, and more; and an ability to effectively communicate protections and access granted through those rights (Rothman, Maldonado, Rothman, 2008, p. 75). For racial and ethnic minority students who are living with disabilities, self-advocacy also includes valuing one’s own cultural and ethnic identity(ies); identifying individual and academic supports; recognizing socio-political contextual influences and influences of institutions of power in having needs met; and asserting, communicating, and negotiating for one’s needs in a manner that simultaneously supports the humanity, dignity, and respect of all persons (Walker and Test, 2011). This is particularly pertinent because racial and ethnic minority populations experiencing disabilities are growing, and this population of students often faces cultural and structural barriers in accessing essential accommodations and services.
Mitchell/West Center for Social Inclusion

Students living with disabilities are enrolling in postsecondary institutions at an increasing rate. The National Center for Education Statistics reports that during the 2015-2016 academic year, 19% of college undergraduate and 11.9% of postbaccalaureate students reported having a disability (U.S. Department of Education, National Center for Education Statistics, 2017). Research indicates that the development of self-advocacy skills for collegiate students living with disabilities is, not only warranted, but is considered paramount to their academic success. (Field, S., Sarver, M.D., & Shaw, S.F., 2003; Field, S. 1996). Walker and Test (2011) contend that higher education requires “some degree of self-advocacy” for students living with disabilities, and these skills serve as a “critical component” since their success or failure ultimately depends on their own ability to advocate for themselves (p. 134). Yet, this skillset is not being consistently taught to students living with disabilities in primary or secondary school.

Students in this population are entering a higher education without a deep understanding of their disability, needs, rights, and selves. This makes it more difficult for students to communicate with college and/or university staff about what accommodations are needed. Choosing not to disclose a disability diagnosis is a personal choice; however, not utilizing on-campus disability support services and approved academic accommodations can lead to academic jeopardy. While the Americans with Disabilities Act (ADA), Americans with Disabilities Amendment Act (ADAAA), and Section 504 of the Rehabilitation Act provide students living with disabilities access to and supports in higher education, it requires student action and self-advocacy to receive appropriate academic accommodations. Services and supports received in secondary education through the Individuals with Disabilities Education Act (IDEA) do not transfer to postsecondary institutions after graduation.

The existence of barriers for collegiate students living with disabilities is expansive despite federally mandated progress, and recent statistics reflect an achievement gap for this population of students. According to The National Center for Education Statistics, postsecondary completion rates for students living with disabilities was lower than that of the general population (38.4% to 51.12%, respectively) therefore, it is vital that higher education campuses recognize and enact programming and policies to combat these barriers and provide students with programming and workshops geared toward educating and instilling self-advocacy skills.

With this in mind, my research includes the creation, development, and implementation of a self-advocacy workshop geared toward current University of North Alabama (UNA) students utilizing Disability Support Services (DSS). After moving forward with the IRB process, conducting a focus group workshop, and convening again to make changes to the overall design, Dr. Hunt, DSS Director Jeremy Martin, DSS Coordinator Stacy Lee, and I started our workshop series in Fall 2018. The workshop included a pre/posttest design that assessed student’s confidence in a range of self-advocacy skills before and after the intervention. The workshop included a presentation on self-advocacy, group discussion of terminology and concepts associated with self-advocacy, role-play scenarios in small groups with current professors at UNA, and a final group-wide discussion. Students were offered an opportunity to engage in a semi-structured interview after the workshop to expand on their lived experiences.

Current Analyses:

Image of a graph of correlations data with self-advocacy pre-test/post-test measures. Data information is written below.

Analyses of the pre/posttest after a series of six workshops suggests that students feel more confident, statistically speaking, in the following areas: Speak up for myself (highly significant at p <.001 [two-tailed]); Request reasonable accommodations from future employers (highly significant at p < .001 [two-tailed]); Advocate for what I want and need in order to be sure I have access to those things (significant at p <.05 [two-tailed]); Request reasonable accommodations from professors and/or staff members (significant at p < .05 [two-tailed]); Explain the legal rights I have in receiving reasonable accommodations as a college student (significant at p < .05 [two-tailed]); and Persevere despite difficulty or delay in achieving success (significant at p < .05 [two-tailed]).

Student quotes from the qualitative data section of the study in speech bubbles: I think there's a stigma still with the seen disabilities, like if you're in a wheelchair or whatever, people will come up to that person in the wheelchair and just talk down to them and...treat them like children. With the unseen disabilities, they get very nosy. They're like, well, what is wrong with you? I mean, you look normal. They [professors] don't really care to know your name. So how many I supposed to expect them to care about my disability if they don't even remember my name? With ADHD...when I first got diagnosed with it, I thought i was like some sort of alien or something. I thought that I was, like, abnormal and that nobody was going to treat me the same. I think most people are ignorant on disabilities--especially people who have never been around disability. I always feel I can tell is someone's ever been around someone with a disability within a few seconds of meeting them just because of the way they interact with me. I feel like the accommodations [I have] help me become, like, equal with everybody else...I feel like it helps me be the same as everybody else. But what's frustrating is when you hear people [say] ‘Oh, that's not really a disability. You're just using it as an excuse. I feel like if I were to disclose [my disability] everyone would probably think like, oh, go easy [on her], and I just don't want that. I would not accept help from people because i viewed it as admitting or accepting that i have this serious disability.

Selected excerpts from semi-structured interviews reveal how their disability(ies) impact them personally and socially. Further analyses of interviews suggest the following:

  • Conflict between multiracial identities and diagnosed disabilities
  • Difficulty with diagnosed disabilities in relation to gender and sexuality
  • Family unacceptance of mental illness diagnoses and/or psychiatric disabilities in several minority communities
  • Fear of being perceived as incapable, deficient, and unintelligent due to diagnosis and/or diagnoses
  • Difficulty interacting with others, being social, making friends, and dating among a variety of diagnoses

Social Inclusion Includes Disability: Why It Matters

A majority of students who took part in the workshop series and/or interviews live with more than one diagnosed disability. The students who were interviewed shared their lived experiences, and current analyses reveals that students are experiencing discrimination, marginalization, and disadvantage based on their overlapping historically marginalized status(es). Incorporating an understanding of where students stand in relation to relevant cultural and historical contexts is necessary in order to meet students where they are and to provide culturally competent programming and services. Professionals must invite and engage students to share their lived experiences, and their experiences should compel professionals to create environments where people listen, acknowledge, and strive to understand how overlapping student identities converge to form systematic oppression, discrimination, and disadvantage for these historically marginalized student populations. Without utilizing an intersectional lens, colleges and/or universities may unintentionally perpetuate inequitable systems for this population of students. Self-advocacy develops and occurs within social contexts, and in order to eliminate systematic barriers, professionals must understand the premises of self-advocacy through an intentionally intersectional lens. It is not enough to determine if a workshop and/or program is simply effective. Statistical analyses do not include the voices of students who are often misunderstood and discounted. Research can be used as a tool to practically impact systems of power, student populations, and programming for the recognition of marginalized populations and social inclusion.

How is this research being used as a tool locally? Well, the Office of Disability Support Services (DSS) on campus offers multiple programs to students utilizing their services with opportunities to gain and hone self-advocacy skills. The office now offers Self-Advocacy Workshops regularly—which is a continuation of the initial research I partnered with the office on last year. Within the past year, DSS has started a Peer Mentoring Program and has established a chapter of an honor society for students living with disabilities: Delta Alpha Pi. Collaborations are also underway as the office works toward starting a summer transitionary program for students living with disabilities entering college. Visit their website for more information: https://www.una.edu/disability-support/index.html 

Lastly, I have partnered with Dr. Andrea Hunt at the Mitchell-West Center for Social Inclusion, DSS, Arc of the Shoals, and Alabama Lifespan Respite to offer an Advocacy Workshop for parents, caregivers, and families. The evening will focus on providing tools, information, and skills necessary for advocates and people living with intellectual disabilities. Respite care will be provided for families who RSVP for that service. Information provided will be backed by recent research in self-advocacy and advocacy for individuals in this population. To connect with these community agencies, visit the following links: http://arcoftheshoals.com/ and http://www.alabamarespite.org.

One last note, as stated earlier, self-advocacy for ethnic and racial minorities living with disabilities is vital. New research argues that students at the intersection of race and disability disproportionately face exclusionary discipline practices in K-12 schools, and these actions, collectively funnel this population of students into the “school-to-prison pipeline” (Laird 2019). Students lacking self-advocacy instruction may be particularly vulnerable to these practices. How will this research be used as a tool to impact school systems nationwide?

Read about the new data and research by clicking the links below:

http://www.abajournal.com/web/article/report-finds-more-discipline-are-at-the-intersection-of-race-and-disability

https://www.usccr.gov/pubs/2019/07-23-Beyond-Suspensions.pdf