Why This Collection?

This project started five years ago over a chance interaction at a writing retreat for junior faculty in our school. Both of us were working on other projects. Separately, we had been considering how to best facilitate and curate sharing of student experience in inclusive higher education. We began to think about this project in new ways, considering our students and all students as publishable authors with truths that needed telling. From the beginning, we believed that whatever was put together would begin to shift the landscape and discourse around inclusive higher education. We could never have imagined the collection that did emerge.

We have our own complicated histories with higher education. Michael enrolled in four separate undergraduate institutions. Along the way, he lost transfer credit and the wish of finding a perfect, welcoming campus experience. He worked full time throughout a majority of undergrad (and graduate school) and only lived on campus for the first semester of his first year. When looking for academic jobs, a professor cautioned Michael to take off his community college experience from his CV, thinking it would jeopardize his job prospects. (He didn’t take this advice. He is a proud graduate of Spokane Falls Community College.) With each passing year of college and academic job rejection, he learned how it supposedly mattered where you went to college and what your pedigree was. Of course, it doesn’t have to be this way, but academia and academics often reinforce the same ableist, racist, classist, and exclusionary models they (sometimes) critique.

Beth had a more traditional undergraduate experience, with four residential years at a small liberal arts college. Now in academia, she is realizing that it was her graduate student experience that was not the norm for a future university professor at a research institution. She took all of her doctoral courses part time while teaching students with disabilities full time in an inclusive elementary school, the first years of inclusion for autistic students there. She concentrated not on research and publication but on the practice of inclusion on a daily basis. Beth then took a meandering path to becoming an academic, pausing her doctoral work multiple times. She completed her coursework, moved states, opened a disability-focused nonprofit, had a baby, completed her comprehensive exams from afar, had another baby, proposed her research, ran the nonprofit center, had another baby, and finally completed her dissertation. This circuitous road took six years longer than she had planned, and she eventually ended up with four children and a (initially non-tenure-track) position at a university. We all struggle with the ideas imposed by others about who belongs in higher education and who does not.

Disabled advocate Judy Heumann famously said, “Independent living is not doing things by yourself. It is being in control of how things are done.”1 Likewise, professor George Dei reminds us, “Inclusion is not bringing people into what already exists; it is making a new space, a better space, for everyone.”2 These ideas are echoed throughout this collection in an emergence of agency as students share their experiences of inclusive higher education. Kailin Kelderman, Eilish Kelderman, and Mary Bryant’s piece “Being Independent Has Risks” confronts issues of safety and the dignity of risk for people with intellectual disability. We learn, in that piece, how Kailin renegotiated control over her own future despite a terrible wrong. She and her family were able to balance the seemingly competing desires of safety and agency. Antonio E. Contreras also demonstrates his self-determination in the first student chapter, “I Want to Go to College”—through his persistence from one college to the next, moving away from his parents both literally and figuratively, and in expressing his goals for his future. This self-determination does not grow in a vacuum; students gain access to skills and knowledge in higher education that support this growth, just like other college students. Antonio, Kailin, and many other student authors have incredible communities of support that have enabled their journeys and choices. Some parents of individuals with intellectual disabilities continue to be the best allies in challenging ableist systems that consider intelligence to be fixed. In the essays, some authors remark how parents were able to assist the search for college or even help move them across state lines. We know that not all students have this type of parental and family support. Admission to college should not be dependent upon social mobility or parental interest and resources. In our own program, we know the importance of engaging with students and their communities early in the high school experience to help facilitate access to higher education for students who did not previously imagine it could be a possibility. As administrators and educators, we need to continue this vitally important work, especially as opportunity expands in campuses, to ensure our programs are not just for those from upper- and middle-class white families.

We also wanted to examine ideas around receiving support and to reconsider how we think about grit and meritocracy in higher education. In “Taking the Llama for a Walk and Other Things That Helped Us,” Olivia Baist and Kylie Walter show us that the complex relationship of friendship and support does not negate the college experience but enriches it. Yet, we are also aware of how this type of support is not without struggle, as Olivia and Kylie discuss. If readers have not watched their documentary (And They Were Roommates: Navigating Inclusive Mentorship in Higher Education, linked to on the Manifold site), we encourage you to. The film expands upon their chapter, highlighting the complex ways that both needed support from each other and their communities. In “Teaching, Assisting, Reflecting: Our Experience Working Together,” Phillandra Smith and Meghan Brozaitis address issues of presumption and belonging. Both came to the classroom with their own notions of outsider identities and navigated the expectations of higher education. Kieron Dyck, in “Inclusive College for All and How My Perception of My History Prof Changed,” writes about how he worked with his history professor to seek the accommodations needed to succeed in class. Many discussed how online learning during the pandemic was challenging. The students sought community and wanted to thrive by receiving in-person support and encouragement. Inclusive higher education challenges traditional ideas about meritocracy and who belongs in college. Can one still be a successful college student if they receive support? If their classes are modified? If they access the university in an alternative way? These programs and students push us to rethink inclusion and postsecondary education in new ways—ways that, we argue, can make college stronger and more accessible for all.

The potential of postsecondary education for creating change is apparent. Allen Thomas, in “I Did What They Said I Couldn’t,” writes about exceeding others’ expectations of him. Before his college experience, he hadn’t done things on his own and his socializing was limited, but he saw a lot of growth after attending higher education. Payton Storms, in “#CreatingMyOwnLife,” reflects on her move from a rural town to a residential college experience at a large midwestern university. Along the way, she meets friends, navigates a complicated bus system, and demonstrates that she too belongs in college. Taylor Cathey, in “‘BGWYN’ and ‘Confidence with Curves,’” also highlights a sense of belonging as she navigates an opportunity to explore her dreams with support and encouragement from many. These pieces demonstrate that, with often small but intentional supports, such as learning campus bus routes or how to connect to student groups, students with labels of intellectual disability are able to find their communities on campus and experience a sense of belonging. Inclusive programs can enable these connections not by creating separate opportunities for the students but by helping to advocate for students enrolled in their programs accessing the entire campus experience.

Creating Our Own Lives powerfully demonstrates that students with labels of intellectual disability are actively engaging and building community through participation in inclusive higher education programs. Students are not passively waiting for opportunities; rather, they are taking on barriers that prevent them from fully accessing all aspects of college. We know that our volume is only a small sampling of the multitudes of students in inclusive programs. We are excited to continue to learn from students in inclusive higher education programs as they narrate and express their truths and challenge us all to continue to work toward inclusive higher education for all.