Disability Studies in Education (DSE) scholars have described the importance of centering the lived experiences of disabled people in order to understand the complex and context-specific nature of living with a disability and to advance justice and inclusion for disabled people. Researchers have yet to explore the perspectives of disabled people on the potential significance of learning about disability topics from people with disabilities themselves. For the current qualitative study, I interviewed nine people with disabilities who had delivered presentations on personally relevant disability topics in a college course to examine their perspectives on teaching from their lived experience and on the potential broad impacts of opportunities to learn about disability from disabled people. The participants believed that learning from people with disabilities contributed insider perspectives and meaningful interactions to the study of disability topics. They hoped that their presentations would teach students to recognize the capabilities of people with disabilities and to see them as individuals. They believed that learning about disability from disabled people has the potential to improve access to communication and community participation for disabled people. These findings contribute important implications and directions for future research.
Disabled people 1 have advocated throughout history within the United States and around the world for justice and equity for their communities. From smashed curbs to ballot measures, people with disabilities and their allies have used a wide range of strategies to resist exclusion and oppression and fight for justice and equity. For example, in 1977 during the historic Section 504 Sit-in, people with disabilities occupied federal buildings across the United States, including the 25-day occupation of a federal building in San Francisco, to achieve the signing of regulations to enforce Section 504 of the Rehabilitation Act of 1973 (LeBrecht et al., 2020). At the 'Capitol Crawl' in 1990, dozens of disabled people crawled up the steps of the U.S. Capitol to draw attention to the impacts of inaccessible buildings and to push for the passage of the Americans with Disabilities Act, which was signed the following year (Kaufman, 2015). The disability rights movement that originated in the 1960s and 70s gave rise to Disability Studies, an interdisciplinary field that resists the deficit-based interpretation of disability and considers the influence of social, cultural, and political factors on constructions of disability (Ferguson & Nusbaum, 2012). Disability Studies strives to produce scholarship that examines the subjective experiences of disabled people and considers their social and political status as a historically marginalized minority group, in order to enact a more inclusive society (Linton, 1998).
Disability Studies in Education
Critical special education teachers and researchers have used the lens afforded by Disability Studies to found Disability Studies in Education (DSE), which provides a framework for imagining just and inclusive possibilities for the education of people with disabilities. DSE resists traditional special education approaches that emphasize individual deficits and privilege the supposed expertise of non-disabled professionals. Instead, DSE scholars privilege the lived experiences of disabled people within their particular social and political contexts in order to promote equitable and inclusive education (Connor, 2014). DSE, with a "commitment to social and political transformation" (Baglieri et al., 2011, p. 269), provides a framework for scholars to engage in "academic activism by 'cripping' the curriculum of primary, secondary, and postsecondary education" (Connor & Gabel, 2013, p. 112). For example, disabled scholars have described how even the presence of disabled faculty 'crips' neutrality by making a political statement about the rights of disabled people to be educated and to receive accommodations in their workplace (Ho et al., 2020). The voices and leadership of disabled people are considered necessary to engage in this "academic activism" for disabled lives (Connor et al., 2008; Linton, 1998).
To discuss the importance of disabled perspectives requires engaging with complex questions about the meaning of disability and the nature of disability identity. Collective disability identity has been embraced by many as a strategy to build solidarity and organizing power so that oppressed groups of people can more effectively advocate for civil rights (Davis, 2013; Kelly, 2010). Through this advocacy, policies such as the Americans with Disabilities Act of 1990 have come to establish various legal definitions and interpretations of what constitutes disability (Emens, 2013). Disability has become a "pervasive cultural system" (Garland-Thomson, 2002), which some have embraced as a salient personal identity and source of pride (Siebers, 2013), others have responded to with "ambivalence and ambiguity" (Kelly, 2010), and others still have reframed or rejected (Johnstone, 2004; Caldwell, 2011).
Identification with the broad categorization of disability is complicated by the phenomenon by which non-disabled people often perceive disability as the only or most significant characteristic of a disabled person (Longmore, 1985; Murugami, 2009). People with disabilities have written about the ways in which their other qualities are often disregarded or erased, so that they are perceived as "a blind person" or "the person in the wheelchair" instead of as an individual person with many qualities (Van der Klift & Kunc, 1994). Intersectional analyses of disability have described some of the many ways that race, gender, class, and other characteristics interact in complex ways in the lives of disabled people (see Wong, 2020 for examples; Annamma et al., 2013; Ben-Moshe & Magaña, 2014). Non-disabled people have also described recognizing individuality as an important dimension for seeing the "humanness" of people with significant support needs (Bogdan & Taylor, 1989). While disability identity has allowed for cross-disability solidarity and greater strength throughout the disability rights movement, disabled people continue to fight, simultaneously, for recognition of their individual personhood. Thus, there is the potential for tension between disability identity as a source of political power and the complex and intersectional experiences of individual people who are regarded as or identify as disabled (Kelly, 2010).
Collective of Individuals
As disabled authors have emphasized, an individual person with a disability cannot represent the perspectives of all disability communities nor speak to the experiences of all disabled people (Johnstone, 2004; Kelly, 2010). Ultimately, disability justice requires responses to disability which acknowledge that experiences and perceptions of disability are complex and context-specific, and interact with each disabled individual's multiple and changing identities (Wong, 2020). This "collective of individuals" approach acknowledges that group identity and individual experiences both matter and allows disabled people to engage in collective organizing that recognizes the importance of individual, intersectional experiences of disabled people (Kelly, 2010).
Perspectives of People with Disabilities
Disability Studies scholars argue that the complexities of lived experiences of disabilities cannot be fully understood, nor can the needs and priorities of communities of disabled people be met, without centering the subjective experiences of disabled people (Ferguson & Nusbaum, 2012). Centering the experiences of disabled people is especially important in applied fields and professional programs, such as rehabilitation and special education, "to help future practitioners remain alert to the rights of disabled people, and alert to disabled people's authority and knowledge" (Linton, 1998, p. 147). To prioritize the perspectives of people with disabilities within the field of education, DSE scholars believe that "disability history and culture and the contributions of disabled people are integral to all aspects of the curriculum" (Connor et al., 2008, p. 449) and have called for the privileging of self-told stories of people with disabilities. The stories of individuals' experiences of disability can counter dominant narratives which frame disabilities as discrete categories defined by individual deficits and can "shift the expert-driven discourse" to better represent the perspectives and priorities of disabled people (Baglieri et al., 2011, p. 273). When these stories are included in the curriculum, students can see the social, cultural, and political complexity of living as a person with a disability in society and share in their vision of equity and inclusion for disabled people.
Experiences of self-advocate educators
There is little research that has directly examined the perspectives of people with disabilities on teaching about disability topics from their lived experiences. To date, there have been some studies in which individuals with intellectual and/or developmental disabilities (I/DD), many of whom identified as self-advocates, have mentioned that they valued past opportunities to teach others about I/DD or believed that future opportunities to teach would have positive outcomes. For example, self-advocates with I/DD have spoken briefly of teaching students about disabilities in order to promote awareness and prevent bullying (Caldwell, 2010; Griffin et al., 2019). Other self-advocates have reported that teaching about intellectual disabilities (ID) through community education programs allowed them to experience a sense of empowerment as "'experts' about their own lives" while confronting negative assumptions about ID (Anderson & Bigby, 2017, p. 114). In addition, autistic college students have expressed the belief that course curriculum related to autism should include autistic perspectives because more input from autistic people could help change negative attitudes about autism on campus (Sarrett, 2017). Finally, co-teachers with ID at a program in the United Kingdom felt that they could best teach students about the life experiences of people with ID because they understand the topic from personal experience (Greenstein et al., 2015). This research suggests that people with I/DD perceive bullying prevention, changing attitudes, resisting negative assumptions, and understanding of lived experience as potential benefits of learning about disability from people with disabilities. However, research is needed that directly and specifically examines disabled people's perspectives on the potential significance of learning about disability through the lived experiences of disabled people.
DSE encourages scholars to consider how education can contribute to movements for justice for disabled people. Learning about disability from disabled people has the potential to promote equity and inclusion for people with disabilities. People with disabilities can draw from their experiences in order to understand the social and political nature and complexity of living with disabilities in society, and therefore speak to the needs and priorities of disability communities. Understanding the experiences of disabled people who have educated others about disability topics can shed light on the potential significance of learning from disabled people's lived experiences in the study of disability topics. The current study adds to knowledge in this area by addressing the following research questions: (1) What are the perspectives of people with disabilities on the educational presentations about disability topics that they delivered to college students? and (2) What are their perceptions of the potential broad impacts of learning about disability from people with disabilities?
Examining the perspectives of disabled people, consistent with a DSE framework, necessitated an interpretivist qualitative research design. I engaged in an interview-based study to understand the perspectives of people with disabilities on guest presentations about personally relevant disability topics that they had delivered to undergraduate students. Centering the experiences of disabled people allowed me to explore perspectives rooted in lived experiences of disability and to examine the potential for learning about disability topics from people with disabilities to promote equity and inclusion as defined by disabled people themselves.
As an undergraduate student, I learned from self-advocates with I/DD of the ongoing movements of people with disabilities to resist their exclusion and oppression and reclaim their agency. As a person just coming to terms with my transgender identity, I felt empowered by the acceptance and support I encountered in disability rights communities. I entered the field of special education out of the desire to support people with disabilities in their efforts to fight for equity and inclusion. As a high school special education teacher for students with I/DD, I saw that the values and practices of my field often did not match the needs as expressed by people with disabilities. I saw students with disabilities denied agency in school, and disability rights activists outraged with characteristics of the special education system. For example, while self-advocates were fighting for access to self-determination, my students were being excluded from their own IEP meetings. Thus, I approached this research study as a former teacher who is highly critical of the deficit- and compliance-based values and practices I encountered in special education. I believe in the necessity of educational and community supports that are based on the desires of people with disabilities.
Setting and Participants
Participants were eligible for this study if (1) they identified as a person with a disability or were considered a person with a disability as defined by the Individuals with Disabilities Education Act (IDEA) 2 and (2) had delivered one or more guest presentations between November 2018 and April 2020 to at least one section of a foundational special education course for undergraduate students. The course in which these presentations occurred is offered each semester at a large university in a northeastern city in the United States. The course curriculum gives an overview of disability categories and policies that impact people with disabilities in the United States, with a focus on the Individuals with Disabilities Education Act (IDEA) and special education services. The professor of the course is a faculty member in the Special Education program at the university. There were 30-60 undergraduate students and one graduate-level teaching assistant involved in the course each semester during the time of the current study. I served as the teaching assistant for one semester of the course. Undergraduate students from any college or area of study could enroll in the course, as it fulfills general education course requirements at the university, but students in the course are typically majoring in the field of education.
All research protocols were submitted to the author's Institutional Review Board (IRB). The IRB determined that the current study did not require IRB review and approval. The study was considered a systematic investigation, characteristic of research. However, because the participants consisted of guest lecturers from different sections of the same course, the project was determined to not contribute to generalizable knowledge and was therefore deemed "not research". Qualitative researchers have long argued that generalizability is often not applicable to qualitative research, and that the implications of qualitative research endeavors are better understood in terms of transferability to related contexts (Merriam & Tisdell, 2016). The IRB guidelines for "generalizability" may have been too narrow to recognize the potential transferability of the findings from the current study. Despite the formal IRB determination, I perceived the current study to be research, and thus confidentiality was maintained throughout the research process and informed consent was obtained from each participant in accordance with IRB policy and with accommodations for participant access.
Nine people with disabilities participated in this study. I emailed invitations to participate to fifteen guest presenters with disabilities who had delivered presentations during the stated time period. Of the fifteen presenters who were contacted, nine agreed to participate. I met seven of the participants when they had delivered their guest presentations in the course. I personally arranged three of these presentations as the teaching assistant. One participant was a former student of mine and had delivered his presentation as part of a field trip that I arranged when I was his teacher. I met one participant for the first time during the study interview. Each participant had delivered an educational presentation where they spoke from their own personal experiences to educate the students about topics relevant to disability and education. For example, Steven (all names are pseudonyms) had delivered a presentation about Deaf education and Deaf culture. He presented on the educational needs of Deaf students, connecting this to his own personal educational experiences as a Deaf person. Alice presented on a panel about her past experiences as a student with a developmental disability (DD) and on her ongoing work for a disability advocacy organization. Some of the presentations that had been scheduled to occur in person were instead delivered remotely due to the COVID-19 pandemic. See Table 1 for the presentation topics of each of the participants.
|Alice (with others)*||Special education experiences and self-advocacy|
|Antonio (with others)||High school experiences of students with disabilities|
|Ava||Education of students with visual impairments|
|Charlie||Living with autism|
|Chris||Deaf education and Deaf culture|
|Liz||Preparing for life after high school|
|Nicole||Preparing for life after high school|
|Ramona (with others)||Autism and typing to communicate|
|Steven||Deaf education and Deaf culture|
* Alice, Antonio, and Ramona presented with others not included in the study. Liz and Nicole presented together.
All other presenters delivered presentations alone.
As other disability scholars and activists have discussed, many of the current participants expressed that each person with a disability is a multi-faceted individual and cannot be assumed to represent the perspectives of others, even those with similar identities or assigned labels. To recognize their individual personhood and avoid the erasure of disability identity and experience, for each participant I present a short description that reflects how the participants engaged in the interview, along with some characteristics and perspectives that emerged during our interactions. Potentially personally identifying information has not been included. I did not collect demographic data (race, gender identity, age, etc.).
When Alice and I met via video call, she spoke passionately about the rights of people with disabilities. She thinks that people with disabilities should be taught "the tools they really need to succeed", including augmentative communication and how to use video conferencing during the COVID-19 pandemic. She told me about a friend of hers that passed away who used to speak at public schools in order to build understanding of people with disabilities. She also expressed appreciation for her family members that take the time to understand her.
Antonio is my former student from a public high school. We spent some time in the phone interview reminiscing about experiences we shared when I was his teacher. He told jokes and funny stories and we both laughed a lot during the interview. He told me that he really enjoyed giving the presentation because he got to "meet a whole new group of humans". Ultimately though, he said the experience was most valuable to him because he hopes the students he presented to will be more patient and "not be a ball buster" when they become teachers. He related this desire to his own experiences as a student with Obsessive Compulsive Disorder (OCD) and some of the ways that he has been mistreated by teachers.
In our phone interview, Ava's responses were filled with stories and examples from her life. Ava spoke about how she has presented for visually impaired students and is studying to be a teacher of the visually impaired. She does not yet consider herself an expert on education for students with visual impairments, but she values serving as a resource to pre-service and in-service teachers who will be or are working with visually impaired students.
Charlie and I met for the first time during the interview. We spoke on a video call with one classroom teacher and one paraprofessional from his high school transition program. Charlie expressed that he felt good that his presentation helped people learn more about autism. He said that the presentation was something he made himself feel comfortable doing. He expressed the belief that people with autism are listened to.
Chris and I communicated on a video call, with two American Sign Language (ASL)—English interpreters. He described his new role as a university-level educator, which he sees as an opportunity to have an impact on students and create change. He found it unfortunate that his presentation and his classes needed to occur virtually as a result of the COVID-19 pandemic, because he felt that two-dimensions could not capture the beauty of ASL and because he was unable to make eye contact with members of the audience. He believes that language deprivation is a major issue in the Deaf community and criticized a recent Early Hearing Detection and Intervention conference that excluded the perspectives of Deaf people. He felt that the conference privileged oralism and that this was motivated by money.
Liz spoke to me on a video call in front of a beachy virtual background. During our interview, she gave a shout out to the "lovely people" that support her, including one classroom teacher and one paraprofessional from her high school transition program that were on the call. It was almost her birthday and she was about to leave school and transition to support in adulthood. When I asked about self-advocacy, she gave examples of how she asks for help when she can't reach something on a shelf or is working on a difficult assignment. She considers herself a "very social person" and wanted to give a presentation so that she could connect with people.
Nicole and her mother joined me for a video call from their living room and one classroom teacher and one paraprofessional from her high school transition program were also present on the call. Following some of the interview questions, Nicole was silent or expressed that she did not know how to answer the question. In some of these cases, her mother or teacher chimed in to rephrase the interview questions in plain language. Nicole talked about how she loves hanging out with people. She feels that Down syndrome makes her special and wants other people to feel special too. She hopes that the students at her presentation felt happy.
Ramona, a self-identified autistic ambassador, responded by email to my interview questions, then met with me on a video call to answer follow-up questions. Sitting in her kitchen with her mother by her side, Ramona typed her responses slowly and deliberately. She wrote about the isolation and depression that she felt before she learned to type to communicate and expressed appreciation for her mother's support and understanding. She referred to the present moment as a "dark time in history" because she worried for her friends who were stuck in group homes during the COVID-19 pandemic without access to communication.
During our interview, which occurred over a video call with two ASL—English interpreters, Steven explained to me that during his presentation he needed to slow down and check in with the interpreters to make sure the audience was getting the full information. He reflected on the lack of access to information that Deaf people and other people with disabilities were experiencing during the COVID-19 pandemic because online information and emergency broadcasts often were not captioned or interpreted. Having recently completed his master's degree, Steven also discussed how he decided to work at a school with a Deaf administration, versus a majority hearing administration, so that he had more space to support equal access for his students.
Semi-structured interviews served as the primary source of data for this research study. I interviewed each participant using semi-structured interview protocols to ensure that specific questions were addressed, while also allowing for flexible interviews where I could follow-up on participants' responses (see Appendix for full interview protocol; Merriam & Tisdell, 2016). Interview questions were open-ended and focused on participants' perceptions of their presentation specifically and on disability education more generally. The phrasing of many interview questions was adjusted to reflect the specific disability identity of each participant. Some interview questions were paired with adapted question alternatives so that the interviewer could rephrase questions or ask more specific questions to facilitate participant understanding and probe for more detail. Each participant was asked all of the interview questions or adapted interview questions from the protocol. Some follow-up questions were common between participants and some were unique based on individual participants' responses.
All interviews took place during the spring of 2020, during the early stages of the COVID-19 pandemic. In response to social distancing precautions and to accommodate participants' communication needs, interviews occurred over email, phone call, or video call. All participants were informed of the study procedures and consented to participate verbally or by sign language. Each interview was video or audio recorded and transcribed verbatim. Interviews were between 9 and 71 minutes in length, resulting in approximately 50 pages of typed transcripts. To engage in first-level member checking, I summarized the main points from each transcript and sent the summaries to participants for their feedback (Brantlinger et al., 2005). One participant added a comment to her transcript. Interviews that were ASL–English interpreted were transcribed based on the interpreters' spoken English. Full transcripts were sent to these participants to verify the accuracy of the interpretation. Participants indicated no changes were necessary.
Each interview transcript was analyzed by categorizing data and developing analytical themes through an inductive multi-stage coding process. First, I constructed concrete, descriptive initial codes focused on meanings and actions for each sentence of the data (Charmaz, 2014). Multiple consecutive sentences were sometimes grouped together with a single code and some sentences were coded more than once. With each subsequent interview transcript, I used the constant comparative approach to compare initial codes across interviews and develop focused codes (Glaser & Strauss, 1967). Emerging patterns were noted in memos throughout initial coding and the development of focused codes. The focused codes largely mirrored the interview questions and were used to create a codebook with eight codes, such as "presentation learning objectives" and "why people with disabilities should (or should not) teach about disability topics." A second doctoral student unfamiliar with the research project served as an external auditor by using the codebook to code three of the nine transcripts (Brantlinger et al., 2005). The auditor also noted patterns and preliminary themes. The coding was compared for consistency and the auditor suggested additional codes. For example, the auditor suggested that the characteristics of participants be coded so that the participants' individuality could be represented in the findings. This suggestion led to the decision to create the participant descriptions included above.
The auditor and I then discussed patterns and preliminary themes. With feedback from the auditor, I developed analytical themes and subthemes. I then coded the nine transcripts based on the analytical themes and subthemes. Finally, I engaged in peer debriefing with my academic advisor, an experienced qualitative researcher, to discuss the analytical themes and share representative quotations (Brantlinger et al., 2005). No changes were made to the analytical themes and subthemes during the peer debriefing. The findings are presented with frequent quotations that demonstrate (or are representative of) the themes across participant perspectives in order to center the voices of people with disabilities and to provide thick, detailed descriptions of their perspectives (Brantlinger et al., 2005).
To contextualize the findings, I first describe participants' general reactions to delivering the presentations. I then discuss three themes and seven sub themes that address the research questions by representing the participants' perspectives on their presentations and the potential broad impacts of learning about disability from disabled people. The participants' perspectives are organized into the following three themes: (1) "We have much to contribute", (2) "It's an opportunity to kind of set something straight", and (3) "I do believe that change will come".
All nine participants described the delivery of their presentation as a positive and enjoyable experience. Many of the participants valued the opportunity to share their story and connect with others on a personal level. A few participants (Nicole, Liz, and Antonio) expressed appreciation for the opportunity to socialize and meet new people and some (Liz, Charlie, and Ava) felt proud of or impressed with themselves for giving what they felt was an important presentation. Ava and Steven felt honored that they were invited and also expressed that the experience supported their professional goals. Although not asked directly, a majority of the participants mentioned in their interviews that they would be interested in presenting again or asked the interviewer if there would be future opportunities where they could present.
"We have much to contribute"
Eight of the nine participants saw themselves and people with disabilities in general as uniquely qualified to teach about disability topics from their lived experience. Ramona, for example, wrote that learning about autism from autistics was the "best way to help others to meaningful clarity about autism." The participants perceived themselves and other people with disabilities as uniquely qualified to teach about personally relevant disability topics because (1) "experts" and other non-disabled people often misunderstand the experiences of disabled people, (2) people with disabilities have insider perspectives, and (3) their teaching creates an opportunity for students to learn through interaction with a disabled person.
Others, Even Experts, Don't Understand
The participants expressed that non-disabled people, even those considered experts in disability fields, have an "outsider opinion" (as Ava specifically named it) and are often unable to teach accurately about disability. In Ramona's experience, "most people have absolutely no clue about autism, even the so-called experts" because, she stated, "so-called experts…can only observe, not live inside, and fully get an autistics' brain." Similarly, Charlie thought it was better to learn about autism from a person with autism because, "someone who talks about autism who doesn't have autism probably doesn't know what he or she is talking about." Steven lamented that hearing instructors get hired in Deaf education even when Deaf people are more qualified, stating, "It's upsetting because they [hearing teachers] don't have the true experience that a Deaf person has and they can't provide that fuller experience to their students." Chris expressed that not only is it best to learn about Deaf education from Deaf people, but that it is perhaps a moral imperative. When asked how it is different to learn about Deaf education from a hearing professor versus from a Deaf person he responded, "Different? My question to you would be: Is it wrong? Do you think it is appropriate for a hearing person to talk about Deaf education? I would pose that question to you." Antonio spoke of different roles to describe how the perspectives of professionals were insufficient. For example, he believed that professors would only teach from the point-of-view of a teacher and could not provide the students' perspectives, while doctors could teach how a mental illness works, but not how it feels. One participant, Liz, felt that professors without disabilities and people with disabilities could be equally qualified to teach effectively about disability topics.
In response to the lack of understanding by non-disabled people, even those considered experts, the participants saw themselves and people with disabilities serving an important role in teaching about disability topics because they possess insider perspectives on lived experiences of disability. Nicole believed that her experience allowed her to teach others about what it is like to have Down syndrome. Similarly, Antonio described why pre-service teachers should learn from his experiences as a student with disabilities, stating, "I've literally been bullied by teachers…I know what it's like to have a bunch of teachers who are against you." Drawing from their personal experience was described as an important aspect of their contributions when teaching others about disability. Steven described how he could help students learn more about the sensory experiences of Deaf people:
I think the benefit is that sometimes if you have a Deaf person who has this experience every day, there are these little things that other people take for granted that they don't realize. We have four senses, right? We are Deaf people; we see, we smell, we taste, and we feel but we don't hear…I am someone who has gone on this journey of experiencing the world through four senses.
Chris expressed that he was qualified to teach about Deaf education because he is "a person who has had the life experience of having navigated the Deaf education system." To contrast the teaching of sighted professors with the richer information that a person with a visual impairment could provide, Ava gave an example of teaching about crossing the street. She explained, "It's one thing to say 'Oh, [people with visual impairments] listen and then they can cross the street.' It's another to actually do it and have the experience of doing it as someone who is visually impaired." Antonio expressed that learning from the insider perspectives of people with disabilities was practical for pre-service teachers because, "You can pick up some better advice from the person actually going through what they're talking about…you're getting it from the student's point of view and how they personally feel and you can pick up one or two notes." Because they possessed insider perspectives of disability, the participants perceived themselves as capable of teaching about nuanced aspects of disability experience that experts could not capture.
Interaction with a Disabled Person
In addition to learning from insider perspectives on lived experiences of disabilities, the participants believed that the students would learn more from people with disabilities because the educational opportunity itself led to meaningful interaction with a disabled person. The participants expressed that it was important to learn about disability topics from disabled people because it creates an opportunity for students to interact with a disabled person and to learn about disability through that interaction. Specifically, the participants expressed that through the educational interactions themselves, the students would be able to see their abilities. Chris, for example, noted that for the students at his presentation, "It may in fact be the first time [the students] have met a Deaf person and seen that we are actually normal and perhaps even recognize that we are bright." He regretted that his presentation needed to occur virtually, because he hoped that his in-person presentation would show, in three dimensions, the beauty of ASL. Alice felt that students would learn more about the abilities of people with DD by seeing those abilities first-hand. Specifically, she wanted students to learn that people with DD have opinions. She recognized that a professor could tell students this but felt they would more likely learn by seeing people with DD actually expressing their opinions. Ava appreciated that people with disabilities were invited to the course where she presented because it shows "real people who go through these real things" and that it was "broadening [the students] horizons by actually meeting people with disabilities and interviewing them and talking to them." Ava and Steven also believed it was valuable to learn about disability from disabled people directly because it provided an opportunity for the students to ask the presenter questions about their experiences. In this way, teaching about disability from people with disabilities was perceived as able to surpass the mere delivery of information, because it also facilitated relational learning.
"It's an opportunity to kind of set something straight"
As the second theme, the participants perceived their presentations as meaningful learning opportunities for the students in attendance and articulated specific hopes for student learning. Some participants expressed a general desire to communicate their personal experiences with disability to the students. Steven shared, for example, "I'm willing to share this [presentation] so that people can understand and touch upon my experience." Some believed that the understanding that could be gained from their presentation had the potential to lead to more positive interactions between the attendees of the presentations and the people with disabilities they would encounter in the future. For example, Antonio hoped that by learning about the experiences of students with disabilities, the pre-service teachers in the class would be more patient and try to better understand their students' backgrounds. Few participants mentioned factual information about disabilities that they wanted the students to learn. Primarily, the participants hoped that their presentations could act as counternarratives by teaching the students to (1) acknowledge the abilities of disabled people and (2) see them as individuals.
Many of the participants hoped that by attending their presentations, the students would leave behind low expectations of people with disabilities that they may have learned previously and instead recognize the abilities of disabled people. By offering their insider perspectives and providing an opportunity for a meaningful interaction with a disabled person, the participants believed that they could confront students' misconceptions and promote a better understanding of what people with disabilities are capable of. Ramona, for example, hoped that the students learned that "people with autism are mostly highly intelligent and sensitive, and are very aware of the world around them despite appearances", later reiterating, "people with autism who don't speak are nonetheless highly intelligent." Similarly, Alice wanted the students to learn that though people with DD may need some support, they have varying levels of independence and it should not be assumed that people with DD need help with everything. She hoped that by seeing people with DD sharing their opinions on the panel, the students in attendance would see their abilities, not just their disabilities. Ava recalled an experience when a student at her university questioned why she, as a blind person, would bother attending college. Ava felt that these low expectations do "a huge disservice to people with disabilities" and saw her presentation as "an opportunity to kind of set something straight" by showing that blind people can and do go to college. Relating back to the belief that others, even those considered "experts", often misunderstand disability, the participants wanted their educational presentations to counter dominant deficit-based assumptions about people with disabilities and instead give a more accurate representation of the abilities of disabled people.
The participants felt that by hearing the lived experiences of people with disabilities, the students would learn to see people with disabilities as individuals, each with their own unique experiences living with a disability. Nicole, for example, hoped that students, rather than seeing only her disability, would understand that Down syndrome is just one part of who she is. Ramona emphasized, "…autistics are very individualistic. So only we can hope to make ourselves known" and Alice wanted the students that attended her panel to learn that everyone, whether or not they have a disability, is an individual with their own abilities. She described how she hoped the students could see from the panel presentation, "that each of us can answer differently. I may answer something in a more independent way than the next person." Some of the participants felt it was important for the students to know that they, as disabled presenters, could only represent one perspective and could not speak to the experiences of all people with disabilities or all people that share their disability identity. Ava acknowledged that by teaching about students with visual impairments as a person with a visual impairment, that she could be perceived by the students as "the elected blind representative." In response to this concern, Ava described how, at the start of her presentation, she explained to the students, "I'm just one blind person, this is just my experience. We're all different, we all experience things differently." Steven stated that if he delivered a similar presentation in the future, he would want to bring other Deaf people with him to include their perspectives because he felt that "varying perspectives will hit different students in different ways and I don't want to be mistaken as the representative of the entire Deaf population, me or anyone for that matter." The participants felt that the specificity of individual perspectives was important, so long as students understood that their individual experiences should not be overgeneralized to a larger disability group. That each participant shared their own personal experience and perspective was not perceived as a limitation, because it allowed the participants to communicate the individuality and complexity of an individual disabled person's experiences. In fact, many participants also described their sense of solidarity with the broader disability movement and perceived sharing their personal stories was one way to advocate for people with disabilities.
"I do believe that change will come"
The participants described engaging in advocacy on behalf of people with disabilities through the delivery of their presentations. They felt that their presentations had the potential to contribute to positive social change to improve the lives of disabled people and expressed the belief that, beyond their personal presentation, more opportunities to learn from the lived experiences of disabled people could lead to increased access and inclusion. Specifically, the participants expressed that their presentations and other opportunities to learn from people with disabilities could promote positive social change for people with disabilities by (1) increasing access to communication and (2) improving community participation. One participant, Antonio, expressed uncertainty that learning from disabled people would necessarily lead to positive social change, because he doubted that people would truly listen and respond to the concerns of disabled people.
Access to Communication
A few of the participants (Chris, Steven, and Ramona) believed that opportunities to learn from people with disabilities, especially Deaf and autistic people, could promote greater access to communication. Because Ramona was able to communicate by typing, she saw herself as "a liaison between autistics and neurotypicals." Ramona believed that by learning from her and autistic people like her, people would be more likely to promote access to communication for autistics, which would lead to more inclusion and justice in their lives. She expressed,
My own personal experience has been that since learning to communicate by typing I am no longer isolated and depressed. Imagine if that could be true for all autistics, speaking or not! We would have a "place at the table" and no longer be marginalized.
Chris and Steven both used their presentations to spread awareness about the problem of language deprivation and the importance of access to language, especially ASL, for deaf children. Steven and Chris felt that by learning more from deaf people, others would see the beauty and importance of ASL, which may lead to greater ASL access for deaf children. Steven used his presentation as an opportunity to advocate for language access and explained, "I have what I consider to be the right beliefs, about what you would do with a deaf child and I want to be able to connect that experience and those beliefs with other people." Chris hoped that explaining to college students about the harms of language deprivation could lead the students to act in their future careers in ways that promote language access. Steven also thought that by learning from his experiences, more hearing people may become interested in learning about the Deaf community and studying ASL, which would allow for direct communication and connection between hearing and deaf people.
Many of the participants expressed that learning more from the lived experiences of disabled people could facilitate increased participation of people with disabilities in the community. Alice, for example, hoped to teach the students at her presentation about the rights of people with DD and the importance of including people with DD in decisions about their own lives. She believed that by hearing more from people with disabilities, others would "slow down a little and not operate so quickly" and see that people with disabilities are not so different. Liz felt that if people without disabilities listened to and learned from people with disabilities, "They might become friends. They might start being honest with one another." Ramona described that learning from autistic people, especially at a young age, was necessary to promote community participation. She expressed,
If we autistics are not perceived as viable members of society the world will never change its course and never give us the respect we deserve. The only way for that to happen is to expose ourselves to more and more young people who's [sic] minds are not yet set on a preconceived notion of autism.
Ramona believed that if autistic people were included in society, they would be able to make important contributions, writing, "If we could participate in society, we might help solve huge complex ideas." With increased access to communication and greater community participation through access to rights and decision-making, honesty and friendship, and being treated as members of society, the participants believed that learning about disability topics from disabled people had the potential to promote inclusion and justice for people with disabilities.
The current study examined the perspectives of people with disabilities on delivering presentations about personally relevant disability topics and on the potential broad impacts of learning about disability from disabled people. The participants expressed that, as disabled people, they were uniquely qualified to teach about disability topics by drawing from insider perspectives that others, even experts, often do not understand and by interacting with students through the delivery of the presentation. The participants hoped that as a result of their presentations, the students would be better able to see disabled people as individuals and recognize their abilities. Many participants believed that opportunities to learn about disability through the lived experiences of disabled people had the potential to promote justice and inclusion for disabled people by improving access to communication and community participation.
The participants in this study were able to bring to the classroom what Anderson (2006) referred to as "pedagogies of lived experience." The participants expressed that it was important to learn from people with disabilities directly because non-disabled others, even those considered experts, often misunderstand their experience. People with disabilities, by drawing from their lived experiences, can contribute insider perspectives to the study of disability. In this way, the participants were able to "offer knowledge through their bodies and experiences that isn't usually part of the curriculum" (Anderson, 2006, p. 328) and enable "critical, experiential, cognitive, sensory, and pedagogical insight" (Brueggemann, 2001, p. 795). In addition to their insight from experience, the participants felt that their presentations facilitated a deeper learning because their presence created an opportunity for the students to have a meaningful interaction with a disabled person. Anderson (2006) noted that teachers with disabilities possess "bodies of possibility" because their embodiments can create more ethical and accessible educational settings. Rather than learning about disability on purely theoretical or factual terms, the teaching of disabled people has the potential to communicate, through a humanizing connection with a real person, what it can feel like to live as a person with a disability in the world.
The findings of the current study suggest that learning from people with disabilities enables pedagogies and possibilities that promote deeper understanding of the complexities of living with disabilities within particular social and political contexts. Unlike traditional special education approaches which have emphasized deficits to be reduced by professional expertise, learning from the experiences of one disabled person or a small group of people with disabilities can capture the individual nature of each disabled person's experience and acknowledge or demonstrate their abilities. Although the guest presentations and current research study were born out of the broad category of "disability", the insights of individual disabled people and opportunity to demonstrate the individuality and ability of each presenter gave these presentations the potential to contribute to social change for disability communities broadly. In other words, representing themselves as capable persons with individual personhood served as a contribution to the broader cross-disability movement for justice. This reflects a "collective of individuals" approach to advocacy, which recognizes individual and intersectional differences within coalitions of disabled people (Kelly, 2010). Learning from disabled people also reflects the tenets of DSE as it resists assumptions and overgeneralizations about experiences of disability and demonstrates the complexity and specificity of the individual stories of disabled people.
Limitations and Future Research
The current study had several limitations that highlight important areas for future research. First, data collection occurred after each participant's presentation and thus did not include the content of the presentations themselves. Observations of the presentations and an analysis of their content, in conversation with the participants' perspectives, would allow for a deeper understanding of the participants' contributions to the course and of their desires for student outcomes. Second, perspectives and learning outcomes of the college students who listened to the presentations in this course were absent from this research. Future studies should examine how students perceived the presentations and examine whether student attitudes towards people with disabilities or social treatment of people with disabilities did, in fact, change based on the presentations by disabled people. Finally, although the focus on disability in the current study allowed for an in-depth understanding of participants' perspectives on teaching from lived experience of disability, this approach lacked an intersectional analysis of how each participants' multiple intersecting identities influenced their perspectives of their presentations. Future research should more directly address the ways in which disabled presenters' multiple identities and experiences, particularly in regard to race and experiences of racism, interact with their lived experience of disability and their presentations on that experience. Dis/ability critical race studies (Dis/Crit) provides a valuable theoretical framework to examine the complex interactions between the interdependent constructions of dis/ability and race (Annamma et al., 2013).
The participants' perspectives suggest that students who learn directly from the personal and professional experiences of disabled people can gain a more accurate and complex understanding of the lives and perspectives of people with disabilities. Even experts in disability fields may hold misconceptions about people with disabilities and lack personal insight about their everyday lives. Learning from people with disabilities directly may be especially fruitful in applied fields, such as rehabilitation and special education, where low expectations and overgeneralizations about disability can prevent people with disabilities from accessing appropriate supports and services. Rather than perceiving disabled people as passive recipients of services, professionals who receive education and training from people with disabilities directly may be more likely to recognize the personal insights of disabled people and attend to their strengths and individual needs. Although the current study described participants' perspectives of teaching college students about disability topics, many of their presentations touched upon their experiences with K-12 education. Presentations delivered by youth and/or adults with disabilities to students in K-12 schools may similarly teach younger students to understand and value the experiences and perspectives of their disabled peers and community members.
The findings also suggest that the participants perceived their presentations as an opportunity to advocate for positive social change in the lives of people with disabilities. Ho et al. (2020) described the ways in which disabled faculty cannot remain neutral to perspectives about disability which challenge their very existence or access to rights. They urge disabled faculty to 'crip' neutrality by letting go of attempts at neutrality and instead engaging their students in conversations that build deeper understanding of marginalization and oppression experienced by disabled people. The participants in this study 'cripped' neutrality by using their presentations as an opportunity to advocate on behalf of their communities. They hoped not just to deliver factual information related to the disability topics of their presentations. Instead they wanted to communicate that people with disabilities should be seen as complex individuals with abilities that deserved recognition, and felt that their presentations and other opportunities to learn from disabled people had the potential to improve access to communication and community participation. The participants' priorities and desires for their presentations and their perspectives on learning from people with disabilities more generally both suggest, consistent with a DSE framework, that learning about disability from people with disabilities has the potential to advance justice and inclusion for disabled people.
It is important to also consider the role of power in the potential to advance disability justice via opportunities to learn about disability from people with disabilities. Each of the participants in the current study taught from their lived experience of disability as invited guest presenters. The course professor who invited the guest presenters requested that specific topics and concepts be addressed in their presentations. The content of the guest presentations was likely influenced by the course professor's direct requests and by assumptions about what is expected of a presenter in a college course. Therefore, as guest presenters the participants lacked a degree of agency over the content of their presentations. Although the participants were not neutral in that they possessed particular social and political objectives for their presentation outcomes, they may have, as is often expected in academic spaces (Ho et al., 2020), avoided sharing perspectives that could be regarded as controversial or overtly political. Also, the participants did not have control over the course curriculum outside of their presentations. It is likely that the curriculum of a particular course has an influence on how guest presentations are received by the students. For example, disabled presenters' desires to emphasize abilities may not be realized if their presentation is situated within course curriculum based on deficit models of disability.
If people with disabilities are involved in curriculum design or as co-teachers throughout a course, this may increase the potential to create more just and inclusive communities by learning from people with disabilities. In fact, some evidence suggests that access to professors with disabilities can influence undergraduate students' attitudes towards disability. Hayashi & May (2011) found that students who had had a professor with a visible disability held more positive attitudes towards disabled people. Shannon et al. (2009) found that while having a family member or coworker with a disability was not associated with differences in attitudes, students who had a professor with a visible disability demonstrated better attitudes towards people with disabilities. The authors hypothesize that exposure to professors with disabilities has a greater influence on attitudes because professors have power in academic settings and are regarded as experts. These previous findings and the findings of the current study suggest that disabled faculty and K-12 educators can have a positive influence on students' attitudes towards people with disabilities.
It is also important to note that the participants in this study enjoyed delivering their presentations and found them personally valuable. The expectation that members of historically marginalized communities are responsible for educating others about their experience can burden these communities with additional 'emotional labor' (Evans & Moore, 2015) and may imply that members of the dominant community are not responsible for educating themselves. The current findings suggest that learning about disability topics from people with disabilities has the potential to bring positive social change for people with disabilities. However, the expectation that people with disabilities must educate others would be counter to the objective of positive social change. As the participants described in the study, opportunities to teach others about disability from lived experience can and should be by choice and an enjoyable and personally or professionally valuable experience.
When the disabled people included in this study entered the college classroom to deliver their presentations, they did not strive to neutrally deliver factual information about the topic. Instead, they 'cripped' neutrality and drew from pedagogies of lived experience to share their insider perspectives in an effort to promote meaningful change in the lives of disabled people. In this way, learning about disability topics from people with disabilities themselves has the potential to teach others to see the complex and context-specific nature of each individual's experience of disability and to recognize the abilities of disabled people. Learning from the lived experiences of disabled people has the potential to promote access to communication and community participation and, ultimately, advance justice for people with disabilities.
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Thank you for joining me for this interview. Remember that you can skip questions that you do not want to answer. You can also change your mind at any time and we can stop the interview. I am going to write about this study and I might share some of the things that you say, but I will not share your name or tell anyone that you were in the study. Is it okay if I turn on the recorder and start the interview?
- What did you talk about when you came to teach at [name of university]?
- How do you feel about the presentation you gave at [name of university]?
- What did it feel like to teach at [name of university]?
- Did you enjoy teaching at [name of university]?
- Is there anything you didn't like about teaching at [name of university]?
- If you came to [name of university] again to teach, is there something you would do differently?
- Why did you agree to come to [name of university] and give a presentation?
- What do you hope the [name of university] students learned from your presentation?
- Why should the [name of university] students listen to you?
- What do you hope the [name of university] students learned about (disability type) from your presentation?
- What was the most important thing that you want the [name of university] students to remember about your presentation?
- What is your perspective on people with (disability type) having opportunities to teach others about (disability type)?
- What do you think about people with (disability type) teaching about (disability type)?
- Do you think it is different when a person with (disability type) teaches about (disability type) compared to a person without (disability type) doing the teaching? How is it different?
- If I want to learn about (disability type), should I talk to someone with (disability type), should I talk to someone without (disability type), or it doesn't matter? Why?
- Is there something that people with disabilities can teach that other teachers don't understand?
- When people listen to and learn from people with (disability type), what do you think the potential outcomes might be?
- Are there any good things that might happen when people learn from people with disabilities?
- Are there any bad things that might happen when people learn from people with disabilities?
- If everyone started to learn from people with (disability type) about the experiences of people with (disability type), what would change? What might that world look like?
- Do you have any other ideas or comments that you would like to share?
In this paper, I use both disabled people and people with disabilities interchangeably to acknowledge disability as a significant personal identity and to communicate respect for the personhood of people labeled with disabilities. When referring to specific individuals or groups, I use their preferred language when known.
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As previously discussed, disability has a multitude of meanings, and individual people relate to disability identity and categorization in complex ways. Because the course was focused on special education, the guest presenters in the course were people who had disabilities according to the definition of disability in the IDEA. Each presenter either identified as a person with a disability or stated that they were considered a person with a disability according to federal definition under the IDEA.
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