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).

Disability Identity

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).

Individual Personhood

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.

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.).

Alice

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

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.

Ava

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

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

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

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

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

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.

Steven

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.

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.

Insider Perspectives

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.

Recognizing Abilities

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.

Seeing Individuals

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.

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.

Community Participation

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.