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Creating Our Own Lives: Introduction

Creating Our Own Lives
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table of contents
  1. Cover
  2. Half Title Page
  3. Title Page
  4. Copyright Page
  5. Dedication
  6. Contents
  7. Introduction: Recognizing Student Voice in Inclusive Higher Education
  8. Part 1. Laying the Foundation: Why Everyone Belongs in College
    1. 1. I Want to Go to College
    2. 2. I Got In
    3. 3. Adventures in Postsecondary Education
    4. 4. A Language to Open
    5. 5. “The Wanderer” and “This Is What I Sing”
    6. 6. My History of the Excel Program
    7. 7. Taking the Llama for a Walk and Other Things That Helped Us
  9. Part 2. Opening Up Possibilities: Overcoming Doubt and Uncertainty
    1. 8. Being Independent Has Risks: How to RecoverWhen Something Terrible Happens
    2. 9. Spartan Kid: Journeys
    3. 10. Best Experiences at IDEAL
    4. 11. Two Poems
    5. 12. Goal(s) in Common
    6. 13. I Did What They Said I Couldn’t
    7. 14. Climbing Higher and “From Mission Impossible to Mission Possible”
    8. 15. Inclusive College on Zoom? My Inclusive Higher Education 2020 Experience
    9. 16. Inclusive College for All and How My Perception of My History Prof Changed
    10. 17. Qua’s GT Excel Life and “Never Give Up”
    11. 18. Photo Essays and Selections from Student Leadership Conference 2019
  10. Part 3. Inclusion as Action: Diversifying Student Experiences
    1. 19. Hi, I’m Jake Miller
    2. 20. “BGWYN” and “Confidence with Curves”
    3. 21. Inclusive College Education
    4. 22. My UC Perspective
    5. 23. Phoenix Nation as in Spirit
    6. 24. My Excel Story
    7. 25. #CreatingMyOwnLife
    8. 26. Inclusive College Education
    9. 27. My Story about Aggies Elevated at Utah State University
    10. 28. Questions and Answers
    11. 29. College Memories but Ready for What’s Next
    12. 30. Full Year of College
    13. 31. My Favorite Memories in College
  11. Part 4. Supporting Growth: Peer Mentoring and Support
    1. 32. Communicating Successfully in College
    2. 33. True Rafferty Interviewed
    3. 34. College Program Experience
    4. 35. Teaching, Assisting, Reflecting: Our Experience Working Together
    5. 36. My Georgia Tech Excel Story
    6. 37. Emma’s Journey
    7. 38. Come Read about My Awesome Journeys through Life
    8. 39. My Social Experience throughout Georgia Tech
    9. 40. The Importance of Goals
    10. 41. Support and Encouragement for the Ones Who Seek It
    11. Coda: Why This Collection?
  12. Acknowledgments
  13. Contributors

Introduction

Recognizing Student Voice in Inclusive Higher Education

Michael Gill and Beth Myers

What is inclusion? On some level this is a fairly straightforward question that demands a similarly straightforward answer. Inclusion means being considered part of a group. In our work, we often talk about inclusion connected to education: true inclusive education means that all students are welcomed into the school and classroom community and are fully supported in their educational process.1 Yet, we know that what is labeled as inclusion can change drastically from one school or program to another. Some models in which disabled students are paired with students without disabilities in a separate camp or after-school program might be called “inclusive.” Low expectations of students with disabilities means that at other times inclusion might be more symbolic—for example, including students with disabilities as members of a club or team without changing any of the structures to allow for meaningful participation. Sometimes these students are called “buddies” or “peers.” We would argue that being a softball manager, in name only, does very little to challenge how ableism and discourses of pity or “specialness” further create separation between the student with disabilities and their peers.

Oftentimes when thinking about inclusion, there is a focus on being in the same space regardless of disability. A performance of a play can be considered inclusive if captioning, ASL, audio description, barrier-free seating, and other relevant types of access are embedded as part of the planning and performance. But is the theater inclusive if access is dependent on an individual requesting it first? Inclusion is often considered only when the student with a disability attempts to enter a space, to go through the door to the school building or classroom with their peers. It is at this moment that educators and administrators (and, ideally, family and the student as well) address the best way to meet the needs of the student. Yet, we often know there can be a large disconnect between what works or what is assumed to be possible and what is the best approach for the student and their community. More often than not, what is called “inclusive” might only be in name and not practice. As we tell our students, most models of inclusion still depend on someone opening the door to the space. Gatekeepers (such as administrators) can have the final say, despite laws that might codify the right to education. Is it inclusion if someone is only allowed to enter because someone else says so?

Inclusive higher education can be understood, then, as a battleground on what counts as, or, frankly, who belongs in, higher education. To be explicit, often individuals advocating for inclusive higher education programs are faced with the most reductive, ableist assumptions that students with intellectual and developmental disabilities do not belong on college campuses. Behind this line of thinking is a belief that focusing on making higher education more welcoming, more accessible for all, will upset the rigor and prestige that many college campuses base their reputations upon. As of mid-2023, there are 318 inclusive higher education programs in the United States, which represent a variety of campuses and styles of colleges, including private universities, liberal arts colleges, and community colleges. Many of these programs are creating opportunities for students that previously could not access higher education. Students attending these programs are receiving education that prepares them for careers as, for example, teaching assistants, prep cooks, office administrators, library staff, and groundskeepers. While attending these programs, students are often given opportunities to expand their skills of independence, learning to manage schedules, commutes, and deadlines.

The range of programs can cater to a wide variety of interests and desires from potential students. Some programs offer vocational training, while others allow students to audit classes on a variety of topics from African American contemporary literature to journalism. Some programs are built on a cohort model where all students take workshops together, while others allow students to tailor their own schedules. There are programs that allow students to live on campus, while others do not. Behind each of these differences reflects a decision about what type of program will be available for students with disabilities. While these programs all might be labeled “inclusive,” we know that opportunities to interact with matriculated students outside these programs might be limited, or even seemingly impossible. Others might even try to allow or facilitate interactions with matriculated students, but the students in the inclusive programs might choose to socialize, go to the dining hall, and generally hang out only with students in the program. Colleges can be fascinating locations of social interaction presenting opportunities to meet many others that do not share your own life experiences, yet, at the same time, there are many opportunities to form collectives around common experiences, including sexual orientation, racial status, and religious practice. The distinction is often whether students are given the opportunity—and supported—in finding others to join in community. We know that some inclusive higher education programs are not inclusive but rather still largely segregate students in separate programs on campus. We also know that disabled students might chose to socialize with each other because of affinity, but also because campuses can be ableist spaces that do not accept their ways of being as valuable.

In a 2022 article, Meg Grigal, Clare Papay, and David R. Johnson provide an overview of inclusive higher education.2 They discuss how there are roughly only six thousand students with intellectual disability enrolled in higher education programs in the United States. (There are almost nineteen million college students in the United States.) Of the total number of students taking classes, 62 percent were enrolled in inclusive classes with matriculated students and only 28 percent were earning college credit.3 In their article, they raise important considerations about how accessible inclusive higher education is for BIPOC students with intellectual disability and how individuals can pay for college. Sometimes, depending on the program, students might be able to utilize Medicaid waivers or vocational rehabilitation funds to help pay for programs, but some opportunities remain out of reach for students without the funds to afford tuition and fees. Barriers remain that prevent students from accessing inclusive higher education, including rigid funding, lack of scholarships, and recruiting patterns that favor white, middle-class students and those with significant home resources and support. In this collection, we have sought a diverse group of students to include the experiences and perspectives of disabled students of color to challenge the assumptions of some about which types of students are accessing these programs. As a collective of educators and administrators, we have much work to do to continue to challenge these structures that prevent many disabled students of color from accessing programs.

In this collection, we have brought together students from a variety of inclusive higher education programs to share their own experiences. In doing so, we shift the focus away from higher education experts and those without intellectual and developmental disabilities. This collection is the first of its kind. Directly asking students with labels of intellectual and developmental disabilities about their college experiences—including their dreams, desires, heartbreaks, and experiences of exclusion and violence—affords the opportunity to nuance our discussions of inclusion. Are inclusive higher education programs meeting the needs of students? In what ways do these narratives illustrate that students are entering college ready to take full advantage of the resources available to fulfill their dreams? What lessons do these narratives offer the next generation of students wanting to go to college?

Inclusion as Method

There is a popular meme that our students often bring to class. On the left, in the first frame, three children are positioned outside center field trying to look in and watch a baseball game.4 A fence is in front of these children. They are each standing on a wooden box, with the word equality written below it. Each child is given an equal number of boxes, but not all can see; in fact, one of the children is quite tall and one is not. The shortest child can only see the fence, not the game. The second frame illustrates the same three boxes and three children, but the resources have been redistributed to achieve what is called “equity.” Indeed, now all children can see the game. The tallest child does not have a box to stand on, the shortest child has two, and the middle child stands on one box. This frame is measured as equity by our students because all three children are at the same height because of the boxes. The meme illustrates how educators should focus on the outcome of resource distribution to achieve something that can be assumed to be equal.

We challenge our students to think beyond this framing of the solution as a more equitable distribution of boxes. Certainly, students that need supports should receive them, but merely passing out support in the name of equity still might not challenge any structural systems that prevent meaningful participation. The fence still exists. These three children are still positioned outside the baseball stadium. The logic that some (those that can pay the price of admission) belong inside and some belong outside is not challenged in the proposed solution. Rather, we ask our students to consider what justice or revolution might be if we applied those principles to this example. There are many examples of how individuals have taken the original meme and modified it for their purposes.5 When asking the students to consider what justice might be for this meme, many talk about removing the barrier of the fence. If the fence were to disappear, the three children could still enjoy the baseball game, but on their terms. Standing, crawling, sitting, on boxes or not, the three will have an unobstructed view, provided they access baseball using many senses, including sight. What was created to get individuals to think about how equal resources can be shared might actually bolster models that reinforce structural inequality. We ask our students to imagine how their classroom and community spaces will continue to be segregating if fundamental structures and assumptions are not challenged.

Sharon Brown, Imani Evans, and Regina Watts discuss how historically Black colleges and universities have not yet expanded offerings for inclusive higher education, except for Alabama Agricultural and Mechanical University.6 The article mentions other programs—including TigerLIFE at the University of Memphis and the Leveraging Education for Advancement Program at Albany Technical College in southwest Georgia—that enroll a large percentage of students from historically underrepresented populations. The U.S. Office of Special Education Programs documents how Black students are overrepresented in special education, including as having labels of intellectual disabilities.7 Yet, as Zeus Leonardo and Alicia A. Broderick argue, “By conceptualizing the problem as one of overrepresentation, there is a risk of tacit reification and legitimation of the naturalness and neutrality of the bureaucratic system of special education as a whole, and by extension, of the deficit driven and psychological understandings of ‘ability’ and ‘disability’ within which it is grounded.”8 Our work in advocating for more opportunities for disabled students of color requires a deep examination of how practices of inclusion and delivery of special education services continue to fail multiply marginalized students. Instead of only advocating for more accurate assessments, which, as Leonardo and Broderick argue, can make these assessments seem valid and neutral and not a product of the oppressive structures, we ought to make sure that in advocating for inclusive higher education, we center the experiences and perspectives of disabled students of color to help challenge white supremacist structures that seek to frame these students as not belonging or enhancing college campuses. In this collection, we feature many disabled students of color and their experiences to challenge the narrative that inclusive higher education is only for white middle-class students with Down syndrome or autism.

In thinking about special education and the power of labeling, one of us, Michael, asks students in an introduction to disability studies course to think about their early messages about what constitutes disability. During this process, Michael talks about two memories that approached disability in two distinct ways. As a child, Michael attended a program for “gifted children” that was held in a school where students with disabilities were bused to. He attended this program once a week. The students in the “gifted program” had very little interaction with the students with disabilities. One of the clearest efforts to create a spatial distinction between the groups of students occurred in the lunchroom. On the floor of the lunchroom was a painted line that literally demarcated forced separation: disabled students in special education on one side and the “gifted” (and presumably nondisabled) students on the other side. (There was an implicit assumption that there were no disabled students in one program and no “gifted” students in the other.) Regardless of the reason for the separation, violence was accomplished by this choice. Michael learned that his peers with disabilities supposedly belonged on one side of the room and everyone else on the other. Any effort toward inclusion or to address complex experiences as students with disabilities and multiple identities was erased with the line on the ground. We can agree that this was not a model of inclusion, although all ate lunch in the same room.

This history of segregation has taken a harsh toll on people with intellectual disability and many other disabled communities. Today, opportunities for employment are abysmal, as roughly 34 percent of working-age adults with intellectual disability are employed nationally. Only half of those who are employed are working in competitive employment, while the rest are in sheltered or segregated work arrangements.9 Students that complete a Transition and Postsecondary Program for Students with Intellectual Disabilities (TPSID) are employed at a much higher rate (67 percent, three years postexit).10 While more longitudinal data can support the claim that postsecondary programs provide opportunities for employment, we do know that many students that finish programs find careers that help enable them to manifest their dreams and desires.

Educational statistics are equally poor, as only 19 percent of students with intellectual disability spend 80 percent or more of their school day in inclusive settings with their nondisabled peers. Students with intellectual disability are in the largest category of disability to be included for less than 40 percent of the school day, sometimes in completely self-contained classrooms with no interaction with school peers or the general education curriculum.11 More often than not, students with intellectual disability continue to encounter educational and service delivery that segregates them based on their disability label. Disabled students of color, students from low socioeconomic backgrounds, and students with labels of “severe” disability face additional barriers that prevent them from accessing inclusive educational and employment settings. We also know that students in segregated settings are often not given opportunities to apply for the inclusive higher educational programs. The path to college is often blocked by placements in segregated spaces and low expectations of academic achievement.

Fortunately, the tide is changing, as increasing numbers of young adults with intellectual disability are actively constructing their own futures. Empowered by generations of self-advocates and robust disability rights movements, individuals with intellectual disability are gaining entry into locations that were previously marked as off-limits. The students featured in this collection are part of this first generation of students that are demanding access to college. A number of colleges and universities are creating programs for students with intellectual disability, initiatives that afford the opportunity to audit college courses with their peers while preparing them for entrance into the competitive workforce. Think College, a national coordinating center for transition and postsecondary programs for students with intellectual disability, maintains a database of 318 programs across the United States.12 One example, Inclusive U, run by the Taishoff Center for Inclusive Higher Education at Syracuse University, is a multiyear program where over one hundred students are currently enrolled. Six years ago, students began living in the dorms on campus, bringing their experience closer to that of their traditionally enrolled peers. As additional programs expand and this generation of students enters the workforce, a new era of inclusion will emerge. Many of the students featured here discuss their desires for careers, living independently away from family, getting married, having children, being active alumni and ambassadors of their colleges, and inspiring future generations of disabled students to enter into college. We are excited to learn from the authors in this collection as they seek out avenues for advocacy to make higher education less oppressive and more welcoming for a diversity of learners.

College is a place of learning, taking risks, and imagining your future self. Anyone with a college-aged student, or working in higher education, can appreciate that some students, regardless of disability, seem to have it all figured out, while others languish, remaining uncertain of what the future holds even after graduation. Some of us major in one field, only to take jobs in a completely different arena. Michael’s students are surprised to learn he transferred colleges four times during his undergrad. In the narratives that follow, many students express ambitions to become professional photographers, actors, fashion designers, and educators, to live independently, get married, and have children. Many of these ambitions are like those of matriculated students. Yet, we know that individuals with labels of intellectual disabilities face barriers in employment, while guardianship or consent laws might make it very difficult for them to achieve goals of independence, getting married, or having a family. The students we work with at Syracuse University often understand the restrictive systems they must navigate. We discuss eugenics, ableism, and paternalism in our workshops and classes. What is our responsibility as educators to prepare students for the reality that their dreams might shift or not be met? How do we remain optimistic about inclusive opportunities and still prepare students for the extensive advocacy for self and others they must engage in to realize their dreams in an ableist world?

As mentioned earlier, employment outcomes are higher for students completing TPSID programs. During the time of working with the authors in this book, we have learned that some were able to achieve their employment goals as photographers or working with animals, for example, while others have had a series of jobs at gyms, restaurants, and childcare facilities. Other students have gotten engaged and are living independently. Others adopted dogs and cats. We believe that inclusive higher educational programs prepare students with intellectual disability to better navigate ableist systems that continue to frame their desires as unrealistic, yet we are also keenly aware that many will fail or make mistakes. As educators, we can prepare our students to be equipped to help actualize their dreams, while continuing to push back against ableist systems that construct those with intellectual disability as forever unable or incompetent. We presume competence for our students and understand that they can be, and are, in charge of their own lives.13 Our students get to decide what constitutes a meaningful life for themselves, and that might be different from how others define that meaning. The ableist views of exclusivity in higher education continue to create barriers, but these individual and collective stories push against that traditional narrative.

We know that only a small fraction of all eligible students with labels of intellectual and developmental disabilities enrolls in inclusive higher education programs. Some of the programs are intentionally small; others might be cost prohibitive. Higher education is still seen not as a right but rather as a privilege for the select few. Annual tuition increases, reduced financial aid, and private and exclusive institutions only exacerbate this distinction. Many programs are concentrated geographically, and the only available option might be hundreds of miles away from a student’s hometown. Others might be inclusive in name and not practice, meaning that students have little to no opportunity to interact with matriculated students. There remain serious sustainable challenges for these programs, including consistent university support and the ability to scale up programs to meet the growing demand. Quite simply, many more inclusive programs are needed.

In discussions about higher education, many people think that only those who are supposedly smart or have a decent SAT score belong. (We do find the decisions by some schools of forgoing SAT and GRE scores in discussions of admissions hopeful, but we are also cautious that other standardized mechanisms will still be utilized.) One of the often-unchallenged assumptions about higher education is that including students with intellectual and developmental disabilities will somehow taint the educational experience of the students without these disabilities. Behind these criticisms is often a belief that students with intellectual or developmental disabilities do not belong in higher education. We disagree completely.

Another memory Michael shares is one he also talks about in the preface to his book Already Doing It.14 As a child, Michael’s favorite babysitter was labeled with an intellectual disability. At the time, he did not know her disability labels, just that he wanted his parents to leave so she could come over and watch him and his siblings. In the home, disability was unnamed and, importantly, his parents did not consider disability to be a barrier to taking care of three young children. As disability studies scholars committed to challenging interlocking systems of oppression, we recognize that inclusive higher education programs can work to dismantle university enrollment policies that have reinforced exclusionary practices where nonwhite students are merely assumed to be targeted for their diversity. We contend that for far too long, students with labels of intellectual and developmental disabilities have been assumed not to belong or to enhance universities and colleges. Universities remain ableist, racist, and exclusionary spaces for many students. As la paperson explains, we can make the university a space of freedom and liberation for those previously excluded by diverting resources and programs.15

Published works on inclusive postsecondary education remain scarce, but new understandings are emerging. Much of the research that does exist is focused on program development or employment outcomes in order to bolster pleas for additional funding. What is largely missing from the research in inclusive higher education are the voices of the students themselves. That is why this book is necessary. Creating Our Own Lives presents student narratives of their experience in order to challenge assumptions that intellectual disability is best met with protection or segregation. This collection is written by students themselves to explore the following questions: How do young adults with intellectual disability experience higher education? How do opportunities in inclusive higher education provide access to skills and knowledge that enable individuals to take control over their futures? How does the interdependent nature of these programs, where students interact with peer mentors and direct support professionals, challenge assumptions of the necessity for grit and meritocracy? What do the experiences of students with intellectual disability tell us about the potential of inclusive postsecondary programs? The stories of the students themselves address these core questions. Readers may notice these themes emerging as the book progresses, and we circle back to a reflection on these questions in the final chapter.

In this volume, the authors are sharing their experiences and perspectives on higher education. Some of the pieces are written in conversation with friends or peers. Others are written by individuals. The authors have used Google Docs, voice recognition, word processing software, speech-to-text apps, Zoom, FaceTime, and many other technologies to capture their experiences and expertise. One constant refrain through the multiyear process of putting together this book was “anything goes.”

As college students were navigating remote learning and the Covid-19 pandemic, many were finding themselves learning from home, or dorm rooms, while trying to remain connected to their friends and classmates. Some of the student narratives talk about a wish for the pandemic to be over so they can return to campus or meet their friends in person. Others entered college during the pandemic, having to figure out complex structures while trying to reduce their exposure. Although we will not know the full impact of pandemic learning for some time, many students faced extensive barriers during the rush to transition online in the spring of 2020. Some inclusive higher education programs were paused abruptly or closed altogether while matriculated peers were able to continue online. Some students did not have access to the learning management systems of the university because of their student status, and others had to exit internship or employment opportunities. Many lost hard-won levels of independence, moving home with family and isolating from friends. Supports had to be reimagined for those who were able to continue their university work online.16 When colleges and universities were all trying to respond to the changing public health landscape, students with intellectual disability were not always centered.

Embedded in this collection is a flexibility grounded in a belief that everyone has a story to tell and share. Labels of intellectual disability do not make these stories irrelevant or inconclusive. Sometimes the mode of telling shifts or requires a different set of tools, but a key guiding principle remains: disabled students belong in higher education. This book (and the accompanying Manifold site) serves as an archive of the first generation of students enrolled in inclusive higher education programs. We invite you to explore the essays at your own pace, moving in and out of the selections as you explore the perspectives of the authors. There is no one way to approach this collection, but we are confident that no matter where you start, you will find valuable perspectives on the meanings of college, inclusion, dreams, support, and success.

Creating Our Own Lives is ensconced in a disability studies framework and utilizes methodological models of narrative inquiry. Narrative as a mode of telling recognizes that knowledge can be shared through stories and memories. Traditionally, people with intellectual disability are assumed to not be reliable storytellers or witnesses. These assumptions are not only incorrect but ableist. In forwarding narrative inquiry in this field, we seek to prioritize individual experiences of meaning-making to challenge these assumptions. We also explicitly challenge assumptions that a collection like this is “not scholarly” or only for a small percentage of readers. Certainly, these essays, and additional resources online, benefit current and future students enrolled in and preparing for college. Their parents, families, and larger support networks can approach these perspectives imagining what success can mean for students with labels of intellectual disability. Higher education administrators, special education teachers, and other practitioners can read these essays that invite us to critically examine our own assumptions while strategizing ways inclusive higher education can be expanded.

In the conclusion to her book Autobiography on the Spectrum Beth writes about how all students can be makers of experience and self-representation. She specifically says that disabled students “create meaning and their own understandings of the world.”17 She continues, “We need to create spaces where we can work with autistic teens to endure hatred, resist oppression, and reframe the dialogue on autism. We need to create spaces for youth to form alliances, push one another, and hold one another up. We need to create spaces for them to represent themselves as agents for change.”18 All people have the ability and the right to be makers in their own lives and tellers of their own stories. We can make space for those stories to be told in a variety of ways that honor the storytellers and value the stories. The testimonies that are shared in this book are immersive works that allow us to understand inclusive postsecondary experiences from an insider perspective, and that view is inherently valuable, despite a historically ableist devaluing. It matters that this work is being published and made available by a university press. In doing so, the University of Minnesota Press is making an explicit political statement that ableist assumptions of who belongs in college ought to be challenged; indeed, this work becomes part of a growing body of literature that centers experiences of marginalized and undersupported students challenging higher educational diversity talk about inclusion. The students here are sharing that being included in name only does not work; it is not inclusion. Meaningful and lasting inclusion is hard and sometimes fraught with contradictions, but ultimately it can enable less oppressive and more equitable higher educational experiences for all.

As inclusive higher education continues to emerge, this work is critical to the postsecondary field. This collection provides a view of the college experience from the standpoint of students with intellectual disability. It foregrounds the first-person perspectives that are often overlooked. This collection has the potential to change how we view higher education and the students who comprise it. Taken individually, each chapter offers a unique view of the college experience. Taken together, this work has the potential to change the face of higher education toward a more inclusive approach.

One of the unique opportunities this collection afforded was a freedom to work with as many student authors as we could possibly connect with. We posted calls for authors on social media and through outreach across the country. We contacted inclusive postsecondary programs and asked Think College to send out flyers on our behalf, recruited authors at the Student Leadership Conference, and even held our own author workshops. On a few occasions, we contacted specific students who we knew might have a particular story to share. We met weekly throughout this process to discuss student submissions and highlight any gaps we felt were missing in the narratives and perspectives. There were weeks (and seasons) where we felt that things were stalled. It was at these moments even more student writing emerged in our inboxes from programs throughout the United States. Poems, interviews, photo essays, and the like began multiplying. And without overstating things, we were blown away by these student authors sharing their inclusive higher educational experiences. Many of these experiences are what could be considered positive; these students find college a rewarding experience filled with opportunities for social and professional connections. Yet, there are other experiences that highlight how students enrolled in inclusive education can at times face ableism from professors that refuse to make reasonable accommodations or form rigid policies that only offer some opportunities for matriculated (degree-seeking) students.

We have collected these works throughout the book in a purposeful arrangement, primarily by theme: “Laying the Foundation: Why Everyone Belongs in College,” “Opening Up Possibilities: Overcoming Doubt and Uncertainty,” “Inclusion as Action: Diversifying Student Experiences,” and “Supporting Growth: Peer Mentoring and Support.” The first section opens with a straightforward but controversial claim: No one should be excluded from higher education because of disability. We recognize that not everyone accessing this text might agree with this claim. It is our hope that readers can shelve their doubts while accessing these pieces. Sometimes our imaginations need permission to dream. We encourage all to take the time to read and experience these pieces. With the necessary supports, we believe higher education can be attainable for individuals with labels of intellectual disability. The pieces in this section advocate for the expansion of inclusive higher education programs. They discuss the need to let students live on campus, have meaningful opportunities to learn, and be challenged, while also being given chances to fulfill their dreams.

The second section, “Opening Up Possibilities,” continues this advocacy while also discussing how students, like their peers without intellectual disabilities, are taking full advantage of opportunities presented in college, including internships, scholarship programs, and student government. (These students are also partying, hanging out with friends, and going to football games on campus, too!)

The third section, “Inclusion as Action,” includes student perspectives from a variety of social and political locations. The students discuss how they succeed once given institutional supports, including peer mentors and a diverse curriculum.

In the last section, “Supporting Growth,” the students are offering advice to their peers with the goal of motivating other students to expect that college can be part of their plan. Of course, we should note that the divisions we made are not absolute, for example, as students might be addressing the benefits of peer mentors, while also discussing how everyone belongs in college. There are threads that weave throughout and patterns that return again and again. As editors, we have tried to refrain from overinterpretation, leaving the pieces to speak for themselves and in concert with one another. We do offer minimal notes on a few essays for background. In addition, on the Manifold site, the students offer pictures and other supplemental materials. (In the printed book, the Manifold icon appears in the margin of essay pages when more is available at the Manifold website.) We made choices of what to include and how to include it. We also worked on multiple rounds of revisions over email, text message, and Zoom sessions with the authors. All throughout, we worked with one goal in mind: foregrounding the experiences and perspectives of the students. We believe this is the most meaningful way to discuss the importance of inclusive higher education. We believe that these experiences, and their stories, challenge the assumptions about including (and excluding) students with intellectual disability in college. These stories tell the real truths about inclusive postsecondary programs. We end the collection with a brief reflection about the importance of this work and our hopes for future collections and partnerships.

Taking inspiration from the leadership of Alice Wong and the work she undertook in making Disability Visibility: First-Person Stories from the Twenty-First Century accessible to many, we are pleased to offer a discussion guide that accompanies this text.19 Similar to the work that Naomi Ortiz completed for Disability Visibility, readers can find a discussion guide on the Manifold site.20 Also on the Manifold site, readers can find photographs, videos, podcasts, and other multimedia self-representations that cannot be reproduced in the written text. Approach this text in ways that work for you. You can pick it up, read a bit, and then put it back on the shelf. Or start in the middle. Or the back. You can write your own experience in response to one of the chapters. Share your stories with others. And with us. We are eager for diverse groups of students, professors, administrators, and troublemakers to continue this work in additional collections, websites, documentary films, art exhibits, op-eds, and the like.

The students that are sharing their work talk about problems with roommates, a desire to find romantic partners, worries about employment after graduation, and struggles to gain independence from families and siblings. None of these concerns and experiences are unique to students with intellectual disability. And at the risk of being too didactic, we consider that to be one of the benefits of this type of collection. College students with labels of intellectual and developmental disabilities enrolled in inclusive higher education programs share many similar concerns with their nondisabled peers. Inclusive programs can be prepared to meet the needs of these students by enabling them to have the resources and support offered to all students.

We would be remiss, however, if we didn’t also call on administrators and program coordinators in these inclusive programs to critically examine our own practices. How are we still upholding models that jeopardize the academic and social success of the students in our programs? Segregated classes, an inability to access campus resources (including scholarships, housing, and student organizations), and mentoring models that might mean having someone decades older than the student accompanying them around campus can all reinforce separate tracks and ableist exclusions. We expect that truths enclosed in these pieces will provide the impetus to continue working toward more inclusive, less oppressive futures. Quite frankly, even those of us that consider our programs a success might still be reinforcing segregation; we can all do better.

Part of the work we do at the Taishoff Center for Inclusive Higher Education involves supporting the national Student Leadership Conference, now in its fifth year as an expert gathering of college students with intellectual disability. At this conference, it really feels like inclusive higher education has arrived. These students are not merely settling for access to classroom—or campus—spaces. Rather, these students are demanding that colleges and universities address their legacies of exclusion and practices that assume students with intellectual and developmental disabilities do not belong in college classrooms. We have seen inclusive higher education opportunities in every state in the United States, as well as several countries across the world. We now have our very own academic journal for the field, the Journal of Inclusive Postsecondary Education, and a National Coordinating Center at Think College, and our professional and student conferences are thriving.

But this is only the beginning. We have a tremendous amount of work to do. There are 318 programs, up from just 25 in 2004, yet they still only represent 6 percent of colleges and universities in the United States. The largest programs—84 students, 100 students, or more—are in universities of 15,000, 30,000, or 50,000 students, representing such a small percentage of the overall student population. This work is valuable, energizing, cutting-edge, and worthwhile. This is work that matters in the world. Sometimes we forget because we are wrapped up in budgets, Title IX regulations, administrative procedures, and data collection, on top of teaching, learning, grant writing, publishing, and everything else on the to-do list. These students are leading the way, pioneers in the field of inclusive higher education. It is our responsibility to amplify their stories and push for change.

Notes

  1. 1. “What Is Inclusive Education?,” Inclusive Education Canada, https://inclusiveeducation.ca/about/what-is-ie/.

  2. 2. Meg Grigal, Clare Papay, and David R. Johnson, “Inclusive Higher Education: Assessing Progress toward Better Futures for College Students with Intellectual Disabilities,” Impact 35, no. 1 (Spring 2022): https://publications.ici.umn.edu/impact/35-1/inclusive-higher-education-assessing-progress.

  3. 3. Often, students enrolled in inclusive programs will audit, or take a class not for credit or a grade. When students finish these programs, they might receive a certificate. This works for some but not all. There need to be more opportunities for students to receive degrees.

  4. 4. Sometimes these are three children of color. Other times the children are represented by three distinct colors: red, blue, and yellow. The various memes try to address access to education (and resources) that has historically been largely unavailable to BIPOC students with and without disabilities.

  5. 5. Craig Froehle, “The Evolution of an Accidental Meme: How One Little Graphic Became Shared and Adapted by Millions,” Medium, April 14, 2016, https://medium.com/@CRA1G/the-evolution-of-an-accidental-meme-ddc4e139e0e4.

  6. 6. Sharon Brown, Imani Evans, and Regina Watts, “Perspectives on Equity in Inclusive Higher Education,” Impact 35, no. 1 (Spring 2022): https://publications.ici.umn.edu/impact/35-1/perspectives-on-equity.

  7. 7. “OSEP Fast Facts: Black or African American Children with Disabilities,” IDEA: Individuals with Disabilities Education Act, August 26, 2020, https://sites.ed.gov/idea/osep-fast-facts-black-or-african-american-children-with-disabilities-20/.

  8. 8. Zeus Leonardo and Alicia A. Broderick. “Smartness as Property: A Critical Exploration of Intersections between Whiteness and Disability Studies,” Teachers College Record 113, no. 10 (October 2011): 2,208, https://doi.org/10.1177/016146811111301008.

  9. 9. Gary N. Siperstein, Robin C. Parker, and Max Drascher, “National Snapshot of Adults with Intellectual Disabilities in the Labor Force,” Journal of Vocational Rehabilitation 39, no. 3 (2013): 157–65.

  10. 10. Grigal, Papay, and Johnson, “Inclusive Higher Education.”

  11. 11. “Fast Facts: Students with Disabilities, Inclusion Of,” National Center for Education Statistics, https://nces.ed.gov/fastfacts/display.asp?id=59.

  12. 12. “College Search,” Think College, https://thinkcollege.net/college-search.

  13. 13. Douglas Biklen and Jamie Burke, “Presuming Competence,” Equity & Excellence in Education 39, no. 2 (2006): 166–75.

  14. 14. Michael Gill, Already Doing It: Intellectual Disability and Sexual Agency (Minneapolis: University of Minnesota Press, 2015).

  15. 15. la paperson, A Third University Is Possible (Minneapolis: University of Minnesota Press, 2017).

  16. 16. Clare Papay and Beth A. Myers, “Inclusive Higher Education in the Time of COVID-19,” Journal of Inclusive Postsecondary Education 2, no. 2 (2020): https://doi.org/10.13021/jipe.2020.2834.

  17. 17. Beth A. Myers, Autobiography on the Spectrum: Disrupting the Autism Narrative (New York: Teachers College Press, 2019), 91.

  18. 18. Myers, Autobiography on the Spectrum, 92.

  19. 19. Alice Wong, ed., Disability Visibility: First-Person Stories from the Twenty-First Century (New York: Vintage Books, 2020), https://disabilityvisibilityproject.com/book/dv.

  20. 20. Naomi Ortiz, “Discussion Guide for Disability Visibility: First-Person Stories from the Twenty-First Century,” Disability Visibility Project, June 30, 2020, https://docs.google.com/document/d/1mWz84Ro0cq5YEPfg2-gXoR-B-T1fCWEIqz_0yZXs1jU/edit.

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This work was supported by the Lawrence B. Taishoff Center for Inclusive Higher Education and the Center on Disability and Inclusion at Syracuse University.
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