As learners engage in learning environments, they constantly co-develop ideas about who they are (their identities), and who they can become (their futures). Designers of learning activities make assumptions about what learner identities and imagined futures learners will ultimately take up. Learning activity designers with developmental disabilities who identify as activists may make assumptions about learners with developmental disabilities that other designers would not. Working from a critical disability praxis orientation, the research was led by a person with a developmental disability. This study utilized a grounded theory approach to discourse analysis to analyze the design talk between two adult activists with developmental disabilities while they engaged in a co-design process to create a learning activity intended for learners with developmental disabilities who use Augmentative and Alternative Communication (AAC). The activity was a game that explores inductive logic. Discourse was analyzed to understand what imagined futures and learner identities these activists assumed learners with developmental disabilities might take up. These activists imagined learners with developmental disabilities who use AAC as being inquisitive, interdependent, and ableism literate, and capable of achieving futures that were validating, inquisitive, accessible, and ableism-literate. These futures and identities suggest that future participatory design research with adults and youth with developmental disabilities might yield innovative curriculum designs.


Learners with developmental disabilities are an important part of human diversity, and one whose members deserve justice and equity in the study and design of curricula, learning environments, pedagogies, and beyond. A central rallying motto of disability activist movements is "nothing about us, without us" (Charlton, 2000). This motto demands that in order to work justly and equitably, research about people with disabilities must be led by people with disabilities (Autistic Self Advocacy Network, n.d.). One research orientation that seeks to embody this motto and value people with disabilities with all support needs is critical disability praxis.

Critical disability praxis is a research orientation developed from/with the disability justice movement (Nishida, 2019). The disability justice movement is one activist community within many disability activist communities. Disability justice uniquely centers the experiences and leadership of multiply-marginalized disabled people (Sins Invalid, 2019). Nishida (2019) proposes that research with disability communities should develop interdependence between academia and community, and foreground the joy of interdependent learning (pg. 246). Interdependence is a value especially within the Disability Justice movement that highlights mutual care (Piepzna-Samarasinha, 2022), spurns measuring individual productivity as a goal or measure of self-worth (Wong, 2022), and most of all takes joy in building relationships that value everyone, rather than tying individual value to independence (Mingus, 2017). This study took up a critical disability praxis orientation, in part by recruiting adults with developmental disabilities (as defined by the United States federal law, Developmental Disabilities Assistance and Bill of Rights Act of 2000 which includes intellectual disability, autism, etc).

As learners engage in learning environments, they constantly co-develop ideas about who they are (their identities), and who they can become. In this respect, past interactions inform what is imagined could occur in the future, resulting in imagined futures (Gutiérrez & Jurow, 2016). For example, Gutiérrez's Migrant Student Leadership Institute (MSLI) operationalized this historicity by designing a learning environment that reframed students from nondominant communities (in this case, youth from migrant farmworker families) as capable of engaging in cognitive and cultural work towards social change. By assuming that learners' family and community environments were not deficient, but in fact rich sources of academic and social development, Guitiérrez & Jurow (2016) reimagined the youths' pasts, presents, and futures as interrelated and supporting positive change. This differs from the common narrative in which pasts and/or presents are positioned as deficient, and an intervention is framed as the key to a better future. Thus, imagining how pasts, presents, and futures are interrelated, and what futures are possible for a given community of learners, is a design decision made prior to students' participation in learning activities. Researchers and curriculum designers assume imagined futures for the learners they design for.

Similarly, learners and their educators co-develop learners' learner identities through their ongoing interactions (Gholson & Martin, 2014; Wortham, 2004). Learner identity refers to how learners view themselves as learners. Learner identities include identities that may be assumed to be external to a learning environment (such as identities related to race or gender), but have been contextually shaped within a given learning environment, and given meaning specific to that environment (Gholson & Martin, 2014). Learner identities can also be taken up around specific interactions, not only in relation to sociopolitical identities like race and gender. Teachers and classmates may position a student as disruptive, and that student may take up that identity by increasing the actions being thus labeled (Wortham, 2004). The design of learning activities and environments helps to structure the kinds of interactions that take place within them. For example, a lecture positions the teacher as an expert, and suggests that students should listen unless called on. Researchers and curriculum designers make assumptions about the learner identities that future learners might take up within learning environments, and the designs they create reflect these assumptions. Thus, imagined futures and learner identities are linked.

Researchers and curriculum designers hold the power and privilege to operationalize their assumptions, often without input or feedback from the intended learners. Studying design processes can lead to a greater understanding of what assumptions are operationalized, where, and how. By understanding what assumptions are operationalized, researchers and curriculum designers can develop more equitable curricula, because they will be better prepared to engage reflectively and avoid deficit perspectives. In service of this goal, this study utilized participatory design research (Bang & Vossoughi, 2016; Booker & Goldman, 2016) in order to develop a greater understanding of designers' assumptions about learners' identities and futures while engaging in a design process. Participatory design research attends to all members of a collaboration, including researchers, as subjects of the research at hand. Through this close attention to all parties involved, it has the potential to move towards epistemic and systemic repair, especially by sharing authority with members of the project who are not professional researchers (Booker & Goldman, 2016). Critical disability praxis can be taken up as an orientation during participatory design research by repositioning the relationships between researchers and participants as interdependent and sensitive to the subjectivity of all involved, rather than positioning researchers as objective external parties who conduct research on subjects. By taking up critical disability praxis, this participatory design research project makes visible designers' power and privilege to determine imagined futures and learner identities before learners with developmental disabilities have entered a learning environment.

A central principle of critical disability praxis is the leadership of the most impacted. This research moved towards this principle by limiting participation to adults with developmental disabilities. This community of stakeholders was chosen due to their lived experiences as adults who inhabit futures that learners with developmental disabilities might want to take up, their frequent envisioning and material work in dreaming up and developing hopeful futures for youth like them, and their lived experience and fine-tuned skills for noticing and resisting ableism. The adults who participated in this study additionally self-identified as activists, and had experience working with youth with developmental disabilities in professional teaching roles (including schools and tutoring).

This research documented two designers with developmental disabilities' assumptions about learners with developmental disabilities, as made evident while designing a learning activity. This study asked: (1) What imagined futures do activists with developmental disabilities assume while designing a learning activity intended for youth with developmental disabilities? (2) What learner identities do activists with developmental disabilities assume while designing a learning activity intended for youth with developmental disabilities? Throughout the study, the co-designers assumed potential learners would be AAC-users, after agreeing that AAC-users with developmental disabilities are a community we are experienced with and focus our activism on supporting. Testing the learning activity with learners is outside the scope of this study's research questions, although future projects that are larger in scope will benefit from doing so.

The participant-researcher (Marrok, he or they) and one participant-activist (Stephanie, they/them) co-designed an adaptation of an inductive logic game. Marrok is a full time Augmentative and Alternative Communication (AAC) user. Stephanie is an AAC user and part time mouthwords user, who used AAC for all meetings. Both members of the design team used text-to-speech AAC devices for the meetings. Both Marrok and Stephanie are queer and transgender people with multiple disabilities, including a developmental disability. Both live in the contiguous United States. This positionality orients this research as by and for multiply-marginalized people with developmental disabilities. Marrok's position in academia means their research interests and chosen methods are still influenced by the interests of the academy. In order to emphasize this membership and the privileges and perspectives that follow, they are referred to as the participant-researcher or the researcher throughout this paper. Stephanie is referred to as the participant-activist, emphasizing their position as an activist outside academia. Stephanie was recruited from within the network of activists with developmental disabilities with a strong online presence, and whose prior/current work as a tutor of youth with developmental disabilities was evident online.


In order to trace the imagined futures that activists with developmental disabilities assumed of learners with developmental disabilities, this research took up discourse analysis (Gee & Green, 1998). Knowledge is constructed via discourse between members of a social practice, rather than existing solely in the minds of individuals (Gee & Green, 1998). Discourse analysis was used to unearth the imagined futures and learner identities contained in talk during the co-design process between the participant-researcher and participant-activist. This provided a setting within the situated practice of designing for learners, which afforded unique insight into the designers' thinking.

Design talk took place across three 90-minute synchronous design meetings, which took place on Zoom, as well as asynchronously in the body of a shared notes document. The synchronous meetings were recorded and transcribed. Transcriptions were initially made by a live transcriptionist (via CART services), and then edited for accuracy and formatting by the researcher. Each time something new was spoken by a different person, this was labeled as a new turn, and numbered. The participant-researcher and participant-activist each wrote journals before starting the design process and after finishing the design process. These journals asked them to directly describe their assumptions about imagined futures and learner identities for learners with developmental disabilities. These assumptions are summarized below (see Journal Responses). In all analyses, the participant-researcher treated their own contributions as participation data within the discourse.

Data was coded using a grounded theory (Charmaz, 2006) approach. During initial coding, a number of bottom-up codes were gleaned from the data that related to imagined futures and identities, respectively. Coded data was then sorted according to whether it was relevant to learner identities, imagined futures, or in some cases both. Talk about topics unrelated to the research question such as software troubleshooting, were not coded. Codes were applied to turns and sometimes to segments made up of several consecutive turns. While developing these codes, their definitions were recorded in a dictionary. If any of the initial codes proved too broad to be useful, turns with those codes were iteratively either recoded with more specific codes or left out of coding and analysis.

For the next level of coding for imagined futures, the participant-researcher coded turns or segments into two groups. Informed by a repeated temporal theme that appeared in the initial coding, one group represented pasts, and the other represented futures. Coded turns that did not hold any indication to past or present were left out of this level. The participant-researcher wrote a memo for each incidence of each code to describe the general statement about the past or future contained within, and engaged in theoretical sorting (Charmaz, 2016), using that memoing to illuminate the types of pasts and futures the designers talked about. This representation of the coded turns revealed stated or implied chronological relationships between codes about the past, and codes about the future, and led to the definition of imagined futures contained within the design talk. The categories of imagined futures assumed in the design meeting talk are discussed below (see Imagined Futures).

For the second level of coding for learner identities, the participant-researcher first engaged in a memoing process for each of the turns coded with an identity-related code. This memoing process described qualities of the imagined learner and assumptions about those qualities contained within each of the coded turns. These memos informed the development of the second level of codes, which described the learners and/or their actions according to relevant themes (such as "being interested" or "making their own choices"). Some coded and memoed turns fell under the same theme, and several had unique themes. These themes representing imagined learners and/or their actions informed the creation of a set of assumed learner identities (see below, Learner Identities).

The pre- and post- design journals used identical prompts (see below, Journal Responses). These questions were developed by the participant-researcher by converting the formal research questions (above) into plain language. The co-designers' Journals provided the co-designers the opportunity to directly describe their assumptions about learner identities and imagined futures. Participants answered the same prompts twice in case engaging in the design process, or simply returning to the questions at a later date. In so doing, this helped participants unearth, rethink, elaborate, or otherwise add to their reflections. Their direct description ensures that each participant is able to self-represent their views directly in the research findings, as mediated through summary. This self-representation is not a validity check. The Journals add to the depth and breadth of the discussion, and make space for the voices of people with developmental disabilities to appear in research. These journal responses further foster interdependence between participant-researcher and participant-activist by reintroducing their voices in direct response to the research questions.

Finally, the participant-activist performed a member check (Hammel, et al, 2008) on this report, which was prepared first by the participant-researcher prior to submission. The learning activity designed during this research has been shared publicly and includes the names of both co-designers, and both their names appear in this article, making this research not anonymous. Without the protection of anonymity, it is ethically important not to misrepresent participants. The member check ensured that the activist was not misrepresented. A lack of anonymity ensures that the participants (researcher and activist) receive credit for their contributions, and ensures the researcher further engages with the participant as a community member invested in research documentation and analysis. This moves towards interdependence between researcher and participant, and is supported by the critical disability praxis orientation of this study.


Imagined Futures

Four explicit imagined futures (Validating Futures, Inquisitive Futures, Accessible Futures, Ableism Literate Futures) and three implied imagined futures (Invalidating Futures, Compliance-centered Futures, Learning-restricted Futures) were contained in the design meeting talk (See Table 1). I provide one example of each of the seven futures below, followed by Table 1, summarizing each. Explicit imagined futures were directly apparent in the talk. In Meeting 1, Turn 63, Marrok says, "I am thinking we want to make sure our assessment process is described so that they have to validate what the learner did rather than look for reasons it did not match some arbitrary standard." This was coded as a Validating Future because Marrok is here imagining a learner being validated for whatever work they do, regardless of its relationship to a learning goal, while engaged in the game. Validating Futures were coded in Meeting 1, Turns 48 and 61-63; Meeting 2, Turns 39-40 and 55.

In Meeting 3, Turn 32, Stephanie says, "The one thing I would add to what you wrote [in the shared notes document] is that preferences can change over again, especially depending on how long you call the game to be." Here, they are imagining a learner might change their gameplay over time to follow multiple lines of inquiry according to their interests and preferences. This represents a future event, in which a learner is engaged in the co-designed activity, and is one example from the data of an Inquisitive Future. Inquisitive Futures were also coded in Meeting 1, Turns 34-35; Meeting 2, Turns 7-10 and 37-38; Meeting 3, Turns 13.

In Meeting 2, Marrok suggests that designing the activity to use "different kinds of new media tools" would allow the learners to develop skills for using their existing technologies for communication (Turn 7). Stephanie agrees, expanding to add "Different people are good at different things and are good at different types of processing" (Turn 10). Here, Stephanie is referencing earlier conversations about cognitive processing needs that differ for many people with developmental disabilities. This was coded as implying an Accessible Future because both participants go on to incorporate accessibility for processing access needs into the design. They are imagining gameplay that automatically accounts for the access needs of potential learners. Accessible Futures were also coded in Meeting 1, Turns 43-44 and 61-63.

Implied imagined futures are not directly described, but are hinted at through descriptions of pasts. This follows from the notion that the past is inscribed in imagined futures (Gutiérrez & Jurow, 2016). In Meeting 3, Turn 7, Marrok says, "Yes. It made me think of algebra class from middle and high school and how much easier it would have been if they explained that stuff first." The turn refers to learning environments that were algorithm- and drill-based, and did not include instruction about logic. This turn was coded as "Learning-restricted Pasts." A specific future is not named, but the description of past experiences suggests a Learning-restricted Future, unless an intervention (in this case, instruction about logic) takes place. Learning-restricted Futures were coded in Meeting 2, Turn 26; and Meeting 2, Turn 60.

Compliance-centered Futures were a big concern for both participants, who saw these as wholly negative. In Meeting 1, Turn 64, Stephanie expresses concerns over past learning environments they have witnessed and/or experienced in which "you can't think wrong." In Meeting 1, Turn 68, they reference a lack of trust in adults who work with youth with developmental disabilities in treating those youth "as an active part of their own education." These represent unwanted Compliance-centered Futures because they represent possible futures where people with developmental disabilities must do what they're told, rather than set their own goals to follow (and receive support in reaching). Compliance-centered Futures were also coded in Meeting 1, Turn 82; and Meeting 2, Turns 20-22.

One turn represented both an explicit and implied imagined future. In Meeting 1, Turn 58, Stephanie states, "I am (inaudible) getting that from making me feel as though I was not a complete failure when I needed to leave school when I had wanted to do a PhD in mathematical logic and it wasn't accessible to me because I felt not alone." Here, they are elaborating on learning from the activism of Cal Montgomery, who had been referenced by name several turns prior. Cal frequently advocates for the value of people with developmental (especially intellectual) disabilities' intellectual work, regardless of school history. Marrok's memo during coding noted, "Past 'failures' reframed as societal barriers to access (but also futures where failures to access are not failures of the person)." Stephanie is explaining that a failure to complete their educational goal (a PhD in mathematical logic) at first felt like a personal failing. But, through learning from and with Cal, they felt less alone and shifted the locus of failure to academia's lack of accessibility. This indicated two possible futures: Invalidating Futures (implied), or, following some kind of intervention, Ableism Literate Futures (explicit). Neither Invalidating Futures nor Ableism Literate Futures were coded in `other turns.

Table 1.
Imagined Futures
Future Description
Validating Futures Futures in which the learner feels emotionally/subjectively validated, because their learning environments have supported their preferences and competence.
Inquisitive Futures Futures in which the learner continues to engage in inquiry practices of interest to them, about topics of interest to them.
Accessible Futures Futures in which the learner is able to engage as fully as they desire because their access needs have been met.
Ableism Literate Futures Futures in which the learner understands what ableism is, and can identify it in practice. They can use this identification to self-regulate and minimize self-blame.
Invalidating Futures Futures in which learners' preferences and competence have not been validated, and where learners feel emotionally/subjectively negative about themselves as learners, such as feeling like a failure.
Compliance-centered Futures Futures in which learners are expected to comply with the wishes, preferences, and rules of others.
Learning -restricted Futures Futures in which learners cannot or do not seek to engage in inquiry practices of interest to them, about topics of interest to them, or where such inquiry is very limited.

Learner Identities

Twenty coded segments were relevant to the designers' assumptions about learner identity. Nine of these were coded Interdependent Learners. Interdependence is a term common in disability social justice movements and disability studies alike, and which disability justice movement writer Piepzna-Samarahinsa (2018) defines as the interconnectedness between all humans and more-than-humans, and a thing to be celebrated. This design team framed relationships with other humans and more-than-humans (such as activity materials and AAC devices) as part of inherently interdependent processes (marked by interconnectedness and relationships of learning and communication).

Interdependence as a construct and movement value is at the core of both designers' activism. It should be noted, however, that the participant-researcher arrived at the above conclusion from the bottom-up through data analysis, not by imposing this existing value on the data. It was through refining these initially incomplete learner identities that the identity Interdependent Learner was settled on. For example, in Meeting 1, Turn 18, Marrok asks, "So do you have thoughts about asking a learner using AAC what they are interested in? Especially if they use a menu-based system that does not have the right word already in it." Stephanie responds in Turn 19, "I feel like even if you're asking someone who doesn't have an AAC method you can start with providing some options and see if any of those are interesting, not interesting, or need more information." Stephanie's response highlights interdependence through an offer-response process between an imagined tutor and the imagined learner. The learner's task is to indicate whether each option is interesting, not interesting, or if they want more information before they decide, but the learner is not presented as making or communicating these choices independently. They do so through interaction with a tutor. This interaction mediates the possible choices, which differs from a situation where a learner might choose from a range of options they independently imagine. Thus, Interdependent Learner, explicitly names the interdependence between the learner and the human and more-than-humans they are working with.

Being an Interdependent Learner was frequently referenced through talk describing an imagined learner working with a teacher, tutor, family member, or friend. Talk focused on how this interdependence afforded or limited learners' ability to make choices or have their preferences centered. In Meeting 1, Turn 68, Stephanie laments, "Basically, I want this to treat these learners as an active part of their own education, and I am not sure I trust adults to do that is where I'm stuck." They point simultaneously to learners as interdependent (in this case, an assumed youth learner working with an adult) and this interdependence as potentially limiting. Alternatively, in Meeting 2, Turn 46, Stephanie notes, "I feel like [the tutor] giving the first rule, and then [the learner] choosing to take it over is a good example format to write down, even if it is an example, because it is a common format I have found people prefer." The interdependent process of switching roles as a form of modeling/testing gameplay facilitates learning, and has been an interactional style they have found successful in the past. These affordances and limitations show that being an Interdependent Learner is not assumed to be positive or negative, but is seen as a neutral way of being for the imagined learners with affordances and limitations.

In the first example (Meeting 1, Turns 18-19), another identity that learners might take up either simultaneously with or separate from Interdependent Learners is described. It is important to emphasize that the designers are discussing learners with complex communication needs, who either have not found an AAC device or technique that works for them yet, or are in a situation in which limited or no options have been tried (made explicit in: "if they use a menu-based system" and "even if you're asking someone who doesn't have an AAC method"). Regardless of this significant level of communication support, the imagined learners are still positioned as having interests about which they are intrinsically motivated. This suggests the existence of Inquisitive Learners as another potential learner identity. This was the most common identity coded. Twelve of 20 identity-related coded segments were thus coded, noting that many segments had more than one assumed learner identity.

The co-designers repeatedly discuss their shared desire that any educator running the game should ask learners what they are interested in (Meeting 1, Turns 16; Meeting 2, Turns 24-26) or describe learners as expressing choices about what they are interested in and how they want to engage in the activity (Meeting 1, Turns 19, 43, 50, 68; Meeting 2, Turns 11-14, 37, 40, 46, 52; Meeting 3, Turns 8, 13, 32). Learners are explicitly described as having "interesting ideas we don't come up with, too" (Meeting 2, Turn 12) and being creative and curious (Meeting 3, Turn 22). These are all traits of engaging in an inquiry process in which learners themselves define what they want to learn about and how they will go about doing so.

Inquisitive Learners are defined here as being intrinsically motivated because at no point in the design talk were external motivators (such as reinforcement schedules or grading systems) mentioned. Instead, the participants repeatedly described the learners as "interested in" (Meeting 1, Turn 16, 18; Meeting 2, Turn 13, 52; Meeting 3, Turn 13). Both the participants have extensive experience working with youth with developmental disabilities, including youth with extensive support needs, and this lack of discussion of external motivators was not an oversight. It was a feature of this unique pairing of participants with developmental disabilities as learning activity designers, the implications of which are discussed further below (see Discussion).

Two less frequently referenced learner identities were also assumed by the design team. Learners Who Feel Like a Failure (three total occurrences) and Ableism Literate Learners (five total occurrences) were both apparent in Meeting 1, Turn 58 (full text above). Learners Who Feel Like a Failure is also apparent in Meeting 1, Turns 63-64. Marrok states, "So I am thinking we want to make sure our assessment process is described so that they have to validate what the learner did rather than look for reasons it did not match some arbitrary standard" (Turn 63). Stephanie responds, "Oh, yes that makes a lot of sense and I agree it is important. Sometimes it is very 'you didn't talk enough,'…or 'you like the wrong things' or 'you can't think wrong.' And that isn't what we want" (Turn 64). In these parts of the design talk, the participants are in agreement that learners should not be made to feel like a failure. This sense of failure is positioned as a potential learner identity that the co-designers see as undesirable.

One way that the participant-activist resisted a sense of failure was through learning about ableism in academic structures from Cal Montgomery. This learning led the participant-activist to reassign the locus of their failure to get a PhD as being within the ableist academic system (Meeting 1, Turn 58, quoted above). This indicates an Ableism Literate Learner identity, in which the learner is able to recognize systemic failures to provide accessibility and interpret them as unjust processes that do not reflect poorly on the learner. The Ableism Literate Learner identity is also implicit in Meeting 2, Turns 10-14. The sequence of turns opens with Stephanie stating, "Different people are good at different things and are good at different types of processing" (Turn 10). This opens a discussion about the learners having a variety of potential preferences (such as preferring sound recording to photography) and cognitive processing needs (a reference to disability-related needs, such as learners with auditory processing disorder who require information in non-audio formats for access). When Stephanie states, "They might have interesting ideas we don't come up with, too" (Turn 12), they are indicating that the learners themselves might innovate solutions to their own access needs. Innovating solutions to access needs is a form of ableism literacy because it requires the ability to recognize that a barrier is due to the environment or task being designed without the learner's needs in mind (rather than internalizing the barrier as a failure of themselves that can only be rectified through internal change). The Ableism Literate Learner identity was regarded in a positive light by the co-designers.

In total, 4 learning identities were assumed (see Table 2). It is interesting to note that many of these assumed identities are clearly linked to the imagined futures described above. The participant-researcher was careful not to simply apply coding from one research construct to the other. A rigorous effort was made to code these two constructs separately, including taking a two-week break between coding imagined futures and coding learner identities, and looking for alternative codes for data. While it is not possible for the researcher to completely remove any priming effect (both from being a participant in the design process, and between coding each of the two constructs), it is also logically reasonable and empirically evident in Gutiérrez & Jurow (2016) that imagined futures and learner identities are deeply intertwined and probably not severable. See Table 2 for descriptions of each of the learner identities developed during this study.

Table 2.
Learner Identities
Identity Definition
Inquisitive Learners Learners who experience intrinsic motivation to pursue interests of their liking, and seek to inquire about those interests, including if/when the interests or preferences change over time.
Learners who believe they are failures Learners who encounter barriers and believe those barriers are representative of internal failures.
Ableism Literate Learners Learners who can recognize ableism in their environment, relationships, etc; perceive that ableism as occurring through no fault of their own; and may attempt to resist that ableism, such as through offering alternatives that would allow them to participate in the desired activity/space.
Interdependent Learners Learners who recognize and intentionally engage in interconnectedness and relationship-building as part and parcel of their learning, including with any combination of humans and more-than-humans.

Journal Responses

As mentioned above (see Methods), the Journal Responses serve as a means for the participants to directly discuss their assumptions about learners with developmental disabilities who use AAC. This direct discussion is in service of self-representation, and for this reason the Journals were not coded. They are instead summarized to make evident the designers' respective perspectives on the research questions, including nuances between their perspectives that influence the design talk. The summary is presented according to the most common themes found in the Journals. The participant-researcher's Journal was treated in the same fashion as the participant-activist's, in line with Bang & Vossoughi (2016)'s assertion that researchers in participatory design research should be subjects in the research. The participant-researcher did not read the participant-activist's Journals until after the coding process above. Both participants used the convention "non-speaking" (with or without a hyphen), instead of AAC-users, which is common in the specific activist community in which they work. It should also be noted that the participants' use of the word "learners" reflects the professional work of both participants, who have worked in various school and extracurricular teaching and tutoring roles with youth students.

Each journal entry had a list of questions at the top of a Google Doc, which participants could use, when crafting their reflections. These questions were: What assumptions do you make about who non-speaking learners are? What kinds of identities do you think they could feel aligned with, especially with respect to their place within learning environments? What kinds of futures do you imagine they could have? How do the learners' past experiences inform these futures? How do access needs affect these identities and futures? Both participants answered all questions in both pre- and post- design journals.

One strong theme was an assumption that AAC-users with developmental disabilities are at a high risk for institutionalization and other compliance-based settings, both as learners and later, as adults. Despite this risk, both participants imagined that the same people were suited to a wide variety of futures that incorporated a freedom to set their own goals and be fully integrated into their communities. Stephanie imagined, "anywhere from institutionalization through living in their own home leading their own lives," "forced into sub minimum wage work," "going to day programs they do not want to go to," "work a job of their choosing," "having the same sorts of lives as any other person," winning awards for various kinds of work, working on a farm, (Journal 1); "living independently," "having supports under their control," "on the streets or in prison" (Journal 2). They assert that these learners "can have any kind of future…And being nonspeaking doesn't prevent the possibility of any of these from happening, but it might make it more difficult for some of them to happen, because of assumptions and how people are treated, and there being more barriers faced," (Journal 1).

Marrok felt that learners in behaviorist learning environments might be exposed to messaging that makes them "feel they can't learn, or have something wrong with them" (Journal 2), or be placed in a "carceral environment" (Journal 2), such as being "institutionalized, abused, or simply stuck in the doldrums of a routine based on what is convenient for other people" (Journal 1). Marrok was clearly concerned about Learning-restricted Futures during journaling. Despite the risk of these compliance-focused environments, Marrok also dreamed that AAC-users could inhabit futures "rich with the things they love" (Journal 2) and "bring them the ebb and flow of joy and awe and growth that leads to a rich, content life" (Journal 1), as well as "futures I haven't yet imagined" (Journal 1).

Stephanie states: "For a non-speaking learner who was denied the ability to learn anything, they'll be more likely funneled into institutionalization," (Journal 2). "I think if they can control their own futures, their futures might go in any sort of direction," (Journal 1). The theme of control (whether being controlled by others, or being in control of oneself) was very important to Stephanie's assumptions. They described being controlled by others as "dangerous" (Journal 2). Stephanie adds, "A lot of non-speaking learners will have a lot of trauma. The details of these trauma will affect the path of the future," (Journal 2).

Both participants stressed a comparison in which freedom of choice and goal-setting is positioned as positive, and being controlled is a threat to people with developmental disabilities. These reflections are mirrored by the design talk data, especially the clear preference for Validating and Accessible Futures over Invalidating and Compliance-centered Futures. What differs, however, is the emphasis on each. In the Journals, both participants spent a significant portion of their writing describing undesirable futures, whereas in the design talk, these futures were mentioned, but the bulk of conversation focused on ensuring the activity would prepare learners and other gameplayers for the more desirable futures they imagined.

Another important theme that both participants returned to throughout their Journals was that learners were expected to be intrinsically motivated to learn, but "failed by the educational system" due to "people treating them like they don't need an education" and "like it is too hard to have them there" (Stephanie, Journal 1), leading to an identity centering resistance. Stephanie described these learners as "people who seek out learning" and may respond to the failures of the educational system by "mentally fighting back" (Journal 2). This resistance included self-advocacy, such as learners who "fight and fight and fight" in order to get access to learning, which may or may not be successful (Stephanie, Journal 2).

Marrok assumed these learners experienced "educational discrimination that has reduced their access to educational opportunities enjoyed by their same age peers," and "the same complex personhood as anyone else" (Journal 1). They were concerned that society "privileges learners who can speak and sit quietly at a desk and 'receive information' in lectures," which might lead some people to assume learners who struggle to sit at a desk and/or can't speak "can't learn or don't want to learn, or can only learn via operant conditioning" (Journal 2). They asserted that all learners with disabilities will develop an identity that incorporates a relationship to disability (Marrok, Journal 2), but that learners who are left out of learning opportunities might have to develop a resistant identity in order to preserve a positive sense of self (Marrok, Journal 1). Marrok was confident learners' disability-specific identities could "lead to the creativity and adaptation that disabled people literally embody" (Journal 2). In both cases, the participants imagined resistance as a source of agency and self-preservation in the face of discrimination. Unlike in the Journals, the design talk assumed learners would not need to be resistant to the activity to see themselves and their disabilities in a neutral or positive light.

Finally, both participants viewed AAC-users as highly literate in accessibility needs and ableism. "The more likely that someone's access needs are taken seriously the more likely someone will be able to do what they want in the community," (Stephanie, Journal 2). Stephanie saw the relationship of access needs and opportunity as deeply intertwined due to societal perceptions. "People of all sorts of access needs, can have all sorts of lives, but some people are deemed 'unworthy' or 'unteachable' or 'not worth the effort'" (Stephanie, Journal 1). Learners who must struggle more for access and inclusive educational placements are impacted both individually: "how people see themselves as disabled;" and collectively: "who they interact with and what movements they are learning from" (Stephanie, Journal 1).

The futures learners ultimately inhabit, Marrok suggests, are informed by "educational tracking… political systems, professional recommendations, familial perspectives and cultures, and socioeconomic and racial privilege" (Journal 1), as well as "learners' ability to do work that non-disabled and speaking disabled people can understand" (Journal 2). The above, especially educational tracking, is deeply informed by learners' access needs (Marrok, Journal 1) because these needs, and how well they are fulfilled, "feed whether or not we can understand each other" (Marrok, Journal 2). Marrok adds the caveat that "access needs and normalization are different. Normalizing disabled people stifles the creativity and adaptation that makes disabled people unique" (Journal 2).

Both participants clearly articulated their assumption that people with developmental disabilities are deeply aware of accessibility needs and the intertwined ableism that comes with advocating for those needs. This mirrors the Ableism Literate Learner identity they took up during design talk, and likely informed their focus on Accessible Futures. Overall, these three themes of the participants' journaling share concerns and visions that were brought up in design talk. However, unexpectedly (to Marrok) the Journals focused mostly on concerns and analysis of the status quo, whereas the design talk represented primarily an opportunity to envision learners with developmental disabilities' futures and identities in a positive way.

The Design

The learning activity designed during this study was an adaptation of the game Zendo. Zendo is an inductive logic game in which one player sets a rule using sets of blocks, and the other players must try to guess what the rule is by building their own sets of blocks that represent the rule (Heath, n.d.). The decision to adapt this game for play by youth with developmental disabilities who use AAC was inspired by the participant-activist, who has extensive experience working with youth with developmental disabilities on mathematics and logic tutoring, and enjoys these topics. The participant-researcher does not have a strong mathematics or logic background, and so contributed perspectives on learning and new media. Throughout the process both offered their expertise and came to agreement via consensus. The primary goal of the design process was to design an activity that would be accessible to AAC users with developmental disabilities, especially those with extensive support needs. This was achieved by adapting the activity to be used with consumer new media tools, such as taking photos, video, or sound recordings with tablets and smartphones (which are commonly used as AAC devices).

The adapted gameplay invites the learner to use inductive logic as a method for inquiry about a topic of interest to them. The learner can take photos relevant to the topic of interest, and which follow a rule the learner has self-defined. Then, a support person, educator, friend, or family member, tries to figure out the rule, following similar steps as would occur in the game Zendo. The roles can be switched as desired by the learner and whomever they are working with, and the game can be played in pairs or groups. User-testing of the design was outside of the scope of this research, but the learning activity description can be requested from the corresponding author via email.

Traces of the design team's assumptions can be seen in the design of the learning activity. The overarching structure of the learning activity design follows a format that first asks for the learners' preferences for how they learn. For example, some learners "may prefer to be told what activities to do," (Fuller & Sedgwick, 2021, pg. 3). Next, the learners' interests should be learned, either by asking them, or through observations about what excites them. There is the option to practice the game of Zendo with a more surface level exploration of the interests, but then the bulk of the activity asks for gameplay to use logic games to explore the learners' interests in progressively more complex ways. This structure reflects the designers'assumption that players of the game will take up an Inquisitive Learners identity. The document directs players to define their own access needs, reflecting the assumption that players are Ableism Literate Learners, and that by practicing these skills of self-advocacy around access, they can be prepared to inhabit Ableism Literate and Accessible Futures, and the Journal themes that focused on the same.

The design team's assumptions are reflected at a finer grain, as well. For example, the learning goal of the activity is, "Explore the use of inductive logic." The word explore, especially as an open-ended goal, parallels the assumption that learners may take up an Inquisitive Learner identity and can be prepared for Inquisitive Futures in which they are intrinsically motivated to learn about things they are interested in. The open-endedness of this learning goal also reflects a lack of desire on this design team's part for Learning-restricted Futures, as discussed in both design talk and Journals.

The activity description largely takes the assumption that one or more people will work together on this activity, centering the Interdependent Learner identity. This is further seen in the specific language that is chosen, such as by repeatedly returning to assertions that the learner's "preferences should be respected" (Fuller & Sedgwick, 2021, p. 1) and "to follow the learner's lead" (Fuller & Sedgwick, 2021, pg. 5), while still emphasizing the need for collaboration (Fuller & Sedgwick, 2021, p. 5) and cooperation (Fuller & Sedgwick, 2021, p. 5).

The activity description includes a number of possible modifications. These modifications often emphasize an Interdependent Learner identity. This interdependence comes through in modifications such as someone helping the learner keep track of what is happening by taking notes or repeating summaries of what's been discussed so far, or by providing feedback on a proposed rule's clarity (Fuller & Sedgwick, 2021, pg. 6). Similarly, if the learner wants to work with photos or video during gameplay, the modifications suggest learners whose motor skills or other access needs might prevent them from personally taking photos or video can take on a directorial role, with someone else taking on a cinematographer role (Fuller & Sedgwick, 2021, pg. 6). The modifications repeatedly return to the assertion that the learner should be asked what works best for them, representing the assumption of Ableism Literate Learners whose futures will be Accessible Futures.

The instructions for assessment clearly parallel assumptions about learners as Inquisitive and capable of inhabiting Inquisitive Futures. The assessment instructions state, "This isn't a game to win or lose, it is a game of exploration," and suggest that instead of looking for right or wrong answers, the goal of assessment is to point out different actions and tactics the learner takes in their inquiry process, and interdependently discuss how those actions and tactics affected the shape of that inquiry (Fuller & Sedgwick, 2021, pg. 7). The assessment does not recommend that learners develop skills for complying with demands, nor does it recommend that anything learners do be labeled incorrect. These exclusions are in line with a design team which does not imagine Compliance-Centered Futures as desirable, and which does not want learners to develop an identity in which they feel like failures, as discussed in design talk.

Overall, the assumptions embedded in the gameplay description paralleled the design team's assumptions about what futures are Validating and what futures are Invalidating. Centering the learner's preferences and needs is assumed to prepare the learners to feel competent and validate their interests. Warnings against memorization and checklists of content (Fuller & Sedgwick, 2021, pg. 8) position compliance as invalidating, reflecting the many comments in the Journals. Other design teams may have vastly different assumptions about learners with developmental disabilities who use AAC, or may have some overlapping assumptions and some different assumptions. This study illustrates that the assumptions that educational activity designers make about learners are embedded in the resulting designs.


Two activists with developmental disabilities envisioned learners with developmental disabilities in a number of imagined futures and taking up a number of learner identities. On a whole, these activists imagined validating, inquisitive futures for learners who were inquisitive, ableism literate, and interdependent, and designed accordingly. Several less-preferred futures and one less preferred identity were implied, and design decisions avoided approaches that co-designers felt might lead to those less preferred outcomes. Other design teams, even with the same participants but in a different setting, or with a slightly different goal, might imagine entirely different futures and identities for intended learners. This study shows clearly that an educational design team's assumptions become embedded in the designs they produce, and that working with people with developmental disabilities to design learning activities for learners with developmental disabilities may lead to curricula that fully embrace positive assumptions about learners with developmental disabilities. Journaling offered more in-depth perspectives on less preferred futures and identities that would not have otherwise been apparent from design talk.

The participants' journaling clearly emphasized concerns that present and past educational environments for youth with developmental disabilities are too controlling and underestimating, and prepare learners for restrictive, compliance-centered futures. Their journals also collectively suggest that these environments and futures are not perceived by the participants as inevitable or caused by the learners' disabilities, but rather by societal conditions. The co-designers' discussion of these concerns was minimal in the design talk. Instead, the design talk focused primarily on discussing ways to support potential learners in reaching inquisitive, interdependent futures and identities. This difference in focus is notable because it points to the richness and complexity of individuals' concerns and hopes, and the impact of the same on design practices. Collectively, the discourse analysis and journaling point to the value and necessity for researchers and practitioners who engage in curriculum and other design processes to carefully attend to their own assumptions about people with developmental disabilities. This attention should be done through systematic, thorough methods that seek to unearth the researchers' and practitioners' own subjectivities, how those subjectivities influence the shape of the curricula and other designs, and to critically assess whether resulting curricula are in line with the goals and dreams of people with developmental disabilities.

The distinction between design talk and journal content in this study makes evident the value in journaling or other forms of self-representation as part of participatory design research. Self-representation is a means to give participants the opportunity to augment researcher analysis with additional thoughts that they feel may be important with respect to the research questions. These thoughts may not always be evident during analysis. Including participants' perspectives moves towards a more equitable research report that honors what is important to participants. Journaling is not the only possible form of self-representation. Exploration of other forms of self-representation are a useful area for future research in disability studies and adjacent fields. This exploration might also seek to develop a better understanding of how different forms of self-representation might fit with various research methods.

Adults with developmental disabilities are not typically consulted for educational research or curriculum design. Due to this, their potential as research partners in educational research is currently not well understood, and this study contributes to this gap in knowledge. The findings of this study illustrate that collaboration with activists with developmental disabilities can bring new perspectives into research and curriculum design for these learners. Positioning learners with developmental disabilities who use AAC as being inquisitive, ableism literate, and interdependent (especially where interdependence is not dismissed in favor of independence) moves against the grain of much research and curriculum design for learners with developmental disabilities.

Much of the current literature and practices for youth with developmental disabilities in the United States assume that systems of external rewards are necessary, due to perceived impairments in motivation (such as described in Cooper, et al, 2020). This view persists despite international empirical evidence that external rewards typically reduce intrinsic motivation over time (Deci, et al, 1999; Ryan & Deci, 2020), and that the appearance of disinterest does not necessarily indicate a lack of motivation (for example, Jaswal & Akhtar, 2019). Furthermore, capitalizing on learners' interests, rather than pathologizing them, has been shown to have promise with some learners with developmental disabilities (Wood, 2019). Collaboration with activists through participatory design research, when that research takes a critical disability praxis orientation and draws on contemporary research on motivation and interest, is one way to produce innovative curricula which can then be tested and refined with learners.

The methods utilized for this study may be criticized as introducing the subjectivity of the researcher-as-participant into the research. It is accurate to assume that the researcher's subjectivity influences this work. The participant-researcher takes the perspective that human objectivity as conceived by positivist scientific practices is an impossible ideal that upholds racism and racial hierarchy (Parsons, 2017), that racism and ableism are co-constitutive (Annamma, 2018; Connor, et al, 2016), and therefore that attempts to conduct research that works towards positivist objectivity is neither possible nor desirable due to its inherently oppressive nature. Making evident the subjectivity of the researcher moves towards accountability, and informs the replicability of the research by ensuring replication studies attend to similarities and differences across researcher subjectivities. Participatory design research values subjectivity as a basis for care in relationship-building, and challenging the relational hierarchies that occur when the researcher is positioned as external to what is being researched (Bang & Vossoughi, 2016). A critical disability praxis orientation intentionally centers people with disabilities as the experts of their goals and needs due to their subjectivities (Nishida, 2019). Where objectivity and neutrality are generally claimed in order to maximize the generalizability of research findings, grounded theorists' work is to explore emergent theories particular to what their respective data "speaks," and therefore evidence of generalizability is neither desirable nor appropriate (Charmaz, 2016, pg. 198). The results of this research illustrate that subjectivity was interwoven in the participants' design process. In line with the above concerns around subjectivity and objectivity, it is likely that the practice of research design is also deeply subjective, and even those working under a positivist lens would improve their work by making their subjectivities transparent.

There are a number of limitations to this study that inform suggestions for future research. The short duration of this study limits the ability to see how the design team members might learn from each other over time. Future research might engage larger design teams, multiple design teams, and longer design projects to better understand designers' learning. It may also be beneficial to engage in comparative studies that seek to understand how activists and other people with developmental disabilities imagine learners' futures and identities in comparison with how people without developmental disabilities do the same. These comparisons can expand our knowledge of the various meanings that people from within and outside of this community ascribe to developmental disability. Future research should also test the products of these design processes with learners. Study of learners engaging in learning activities created through participatory methods would make evident how these assumptions and the designs that grow from them impact learners. This would create a more holistic understanding of the potential benefits of participatory design research for this community, which was outside the scope of the present study.

The researcher's position in academia means they have been socialized into certain ways of thinking about research. They decided on the research questions for this study, and therefore the study was not fully participatory. Future participatory design research with people with developmental disabilities might move beyond this limitation by partnering with community members who are not members of academia, and especially those without post-secondary degrees, during every stage of research, including and especially in the crafting of research questions.

A central premise of critical disability praxis is leadership of the most impacted. While both participants of this study experience intersectional oppression (Crenshaw, 1989), including ableism and at least one other source of discrimination, this study only moves towards (but does not fully embody) this principle. The requirement that participants all have professional experience educating youth with developmental disabilities by definition limited the possible participant pool to those who have had formal post-secondary education. This privilege is not afforded to all people with developmental disabilities. Future research must partner with people with developmental disabilities with all educational backgrounds, especially those who completed Alternative Assessments in lieu of a high school diploma. Design teams that include Black, Indigenous, Latine/x, and other people of color, and design teams that do not require the members to have experience working in teaching roles with youth should be centered in future participatory design research with this community, and outside of the United States context. This work should also be done with youth learners themselves, as modeled in Frauenberger, et al (2019)'s participatory technology design project with autistic youth.

In the future, researchers might integrate analyses of design team talk into participatory design research and other collaborative research methods. This can lead those researchers to better understand how their own assumptions shape what they create. Self-reflection and reflexivity are necessary in equity-oriented work to ensure that transformation of inequity occurs, rather than merely seeking methods that increase mastery of dominant forms for learners from non-dominant communities (Bang & Vossoughi, 2016). Discourse analysis, and other methods that look at talk and interactions between research/design team members, can be a powerful tool that makes researcher subjectivities and assumptions evident.


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Author note: We have no known conflicts of interest to disclose. A copy of the learning activity that was designed during this study can be acquired free of charge by contacting the correspondence author. Marrok Sedgwick is a 2021-2024 Microsoft Research Ada Lovelace Fellow.

Correspondence concerning this article should be directed to Marrok Sedgwick, 1240 W Harrison St, Chicago, IL 60607, United States. Email: msedgw2@uic.edu

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