Rethinking Person-Centeredness: Contestations of Disability,Care,and Culture at the Social Service Application Interface

International Health Communication in Technical Communication

Technical communication researchers have studied health communication as a site of translation, wherein specialized medical knowledge is translated to resonate with patients’ concerns, experiences, and literacies. Medical translation, however, cannot exclusively be understood in terms of moving between specialized and lay literacies. Medical communication also necessitates translating between languages and cultures (see Bloom-Pojar, 2018; Gonzales & Bloom-Pojar, 2018; St.Amant, 2017). Yet, research shows that American health care is failing to serve patients from other cultures. In the United States, new immigrant populations experience greater barriers to health care than any other group (U.S. Department of Health and Human Services, 2017). The Patient-Centered Outcomes Research Institute, the National Institute of Health, and the Agency for Healthcare Research and Quality have all identified health communication as a key site of health disparity intervention.

Technical communication scholarship offers heuristics and methods relevant to this called-for intervention. These include Patient Experience Design (PXD; Melonçon, 2017), International PXD (St.Amant, 2017), critical contextual methodology (Ding, 2014), and participatory design (Agboka, 2013). These approaches collectively focus on context as an important and underutilized dimension of international health communication. Melonçon (2017) has contended that applying usability frameworks to healthcare settings reveals a “context problem”: the proliferation of carefully designed materials that fail to “function appropriately because those who created them did not take into full consideration the myriad of complexities and nuances of the context in which the patient (and others) would use the information” (p. 21). St.Amant (2017) extended Melonçon’s work with International PXD, which asks technical communicators to consider context in terms of the material conditions where individuals use healthcare information and the culturally shaped “usability expectations” users bring to information (pp. 66–67).

Recent technical communication studies of cross-cultural health communication demonstrate that context is shaping research questions, methods, and applications. Studies have “shifted […] contextual scale” away from “larger and complex contexts” and toward situations “much smaller, much more contained, where a specific experience and context can play a major role in a patient’s life and wellbeing” (Melonçon, 2017, p. 22). These situated studies are often community-engaged projects, wherein researchers partner with organizations to improve accessibility of healthcare information and resources (e.g., Agboka, 2013; Bloom-Pojar, 2018; Rose et al., 2017). Such localized studies shift analytical focus from production of information or tools to their situated usage.

In the following case study, I examine situated usage of a person-centered disability application. I ask how social service documentation can both engage local contexts and function within institutional structures. I confirm technical communication scholarship that foregrounds context as critical to cross-cultural health and medical communication, and I extend this body of scholarship by identifying bureaucratic literacy as an ethnocentric and normative literacy that undergirds consequential healthcare documents, such as social service applications, and that is rarely taught, acknowledged, or challenged.

Disability Studies and Accessibility in Technical Communication

Disability is a cultural category that depends on social relationships and involves linguistic infrastructures, attitudes about bodies, and medical knowledge. Technical communication scholarship has adopted disability studies approaches to interrogate and intervene on how technical discourses rely on unstated, ableist norms. Ableism, here, refers to the deference to able-bodiedness as an unmarked norm. The norming of able-bodiedness subordinates differently abled bodies and assumes “it is better for a child to walk than roll, speak than sign, read print than read Braille, spell independently than use a spell-check, and hang out with nondisabled kids as opposed to other disabled kids” (Hehir, 2002, p. 3).

Technical communication scholars have studied scientific, medical, and technical communications through the lens of ableism (Browning & Cagle, 2017; Melonçon, 2012; Palmeri, 2006; Walters, 2010; Wilson, 2000; Zdenek, 2011). These studies reacted to prior scholarship that addressed how to accommodate texts and technologies to users with specific disabilities (e.g., O’Hara, 2004; Ray & Ray, 1998)—for example, how to use screen readers to make a website accessible for visually impaired users. Such prior work is important, but also limited by a narrow and, at times, ableist framework that sees disability as an individual problem addressable through impairment-specific accommodations (see Palmeri, 2006). This accommodation-driven approach fails to address how technical communication constructs and is constructed by normalizing discourses.

In response, scholars have supplied methods for teaching and studying how normalcy is constructed through texts and technologies, including safety communication (Palmeri, 2006), closed-captioning (Zdenek, 2011), medical discourse (Wilson, 2000), assistive technologies (Walters, 2010), and municipal evacuation plans (Browning & Cagle, 2017). These studies move away from accommodation, which provides disability-specific supports on a retroactive basis, and aim for accessibility, which prioritizes creating spaces, products, and texts useful to a broad range of users. Accessibility thus “relocate[s] disability from a single impairment to a condition produced by limiting structures, designs, and products of the social and built environment” (Walters, 2010, p. 25). The development of accessible products and processes must directly involve disabled creators and users, who possess, among other forms of expertise, embodied knowledge that can transform and improve technical communication (Palmeri, 2006). This scholarship culminates in an imperative to collaboratively reveal and challenge ableist constructions and to envision more accessible processes and products. In this study, I identify social service documentation as one, consequential site wherein ableist and Western-centric assumptions alienate users and further entrench health and access disparities.

Culture, Rhetoric, and Autism at the Paperwork Interface

Autism, as Heilker and Yergeau (2011) have shown, is a rhetorical phenomenon, one that, Jack (2014) elaborated, engages scientific knowledge, gaps in scientific knowledge, family stories, and cultural narratives. I approach the WCAG application as a crucial technical writing site in which autism is rewritten into a nonrhetorical category and is positioned as a stable, medical entity. When laypersons sit before an application, they must follow the document’s structure: answer questions, select from preidentified choices, supply requested information, and present evidence. The parent, now applicant, maps her child along the county’s coordinates and tells her child’s story as filtered through the document’s categories. The application asks questions. Applicants respond. Resources are allocated. Certain forms of care are supported. Others are denied. Applications function as dynamic sites at which applicants and institutions define, value, and set in motion practices around unstable objects, such as disability, family, care, expertise, and health. In this entry, I analyze how a Western and medical conception of disability grounded and therefore undermined this person-centered application. My suggested interventions are informed by the friction that persists between a bureaucratic approach to disability and the lived realities of disability that exceed the application’s categories and open space for corevision.

Key Artifact: The WCAG

This case study centered on one document: the WCAG. Authored by Wingham County in 2016, the WCAG could be publicly accessed as a PDF on the county’s webpage, where an informational page titled “Autism Spectrum Disorder” and filed under “Mental Health” provided a link to the WCAG. All applicants in this study accessed the WCAG as a printed document introduced in face-to-face meetings organized by Wingham County and Midnimo. The WCAG could be submitted by e-mail as a PDF attachment, by mail, or by hand delivery as a printed document.

The WCAG document consisted of an explanatory introduction (1 page) and an application (2 pages). The introduction explained the grant was designed to “provide flexibility for individuals and families to determine how best to meet the needs of their situation” and provided a nonexclusive list of eligible services:

“Licensed or non-licensed respite services

The related application began with a chart for identifying information: name, address, phone number, social security number, race, e-mail, case manager’s name, and e-mail address. The application also specified two eligibility criteria:

“Must have a diagnosis of Autism Spectrum Disorder or Related Condition (please attach supporting documentation)

Participant Recruitment

For this case, I used interviews and observations to collect data from 26 Somali mothers, 5 Midnimo community health workers, and 6 social service providers. Participants were recruited through Midnimo’s existing relationships; Midnimo staff e-mailed or hand-delivered recruitment letters I wrote to Somali parents, community health workers, and social service workers participating in WCAG workshops. Because some parents did not read English or Somali, Midnimo staff also contacted potential participants by phone and invited them to attend an informational meeting. We held three informational meetings at Midnimo, and if attendees remained interested, I met individually with them to administer informed consent documents.

A Somali interpreter was present at all informational and consent meetings with Somali parents. Informed consent documents were written and read aloud in either or both English and Somali. In this article, I assign pseudonyms to participants and specific places, including Midnimo and Wingham County. (All data were collected in accordance with the University of Minnesota’s Institutional Review Board approval, study #00002028.)

Data Collection

To study how participants used the WCAG, I conducted structured, artifact-based observations and interviews and ethnographic observations and interviews. These methods allowed me to examine how the WCAG choreographed specific writing situations in which applicants, community health workers, and institutional representatives negotiated practices of disability, parenting, and care. Incorporating artifact-based data into an 8-month case study allowed me to examine the grant’s usability beyond the bounded moment of application-writing; I used ethnographic interviews and observations to study longer term effects of grant writing within the contexts of participants’ everyday lives.

Artifact-based observations and interviews

This method involved 26 artifact-based observations and 37 artifact-based interviews done between December 2, 2017 and July 10, 2018. For this process, I observed applicants fill out the WCAG. Because applicants completed their applications with community health workers, I followed the writing process by listening to their discussions, reading the answers each pair composed, and recording each process in my field notes.

A translator was present during all artifact-based observations, and the nature of translation shifted depending on the language backgrounds of community health workers. When a Somali applicant worked with a Somali-speaking community health worker, the pair often spoke in a mix of Somali and English. Twenty-one out of 26 application writing processes took place in mainly Somali. The remaining five WCAG processes were undertaken with a community health worker who knew little Somali, and these discussions unfolded entirely in English.

I followed observations with 30 minute, structured artifact-based interviews, and questions addressed the following:

understanding of the document;

emotions evoked by the document;

perception of how the document represents the applicant, her family, disability, health, and available services; and

expectations for who will read and use the document (see Table 1).

An interpreter was present in all interviews.

In observing WCAG writing processes, I learned most applicants (25 out of 26) sought community health workers’ aid when writing their applications. I also found social service providers constituted a third collaborator group in that they introduced applicants to the WCAG and then evaluated applications. Therefore, to understand how the WCAG worked, I needed to understand how community health workers and social service workers also used these forms. I interviewed five community health workers and six social service workers. Interviews used the same structured categories to address understandings of, feelings about, perceptions about, and foresight concerning the use of the WCAG (see Table 1).

OPEN IN VIEWER

Table 1.

Artifact-Based Interview Questions.

Aspect	Questions
Understanding of documents	For applicants: Were there parts of this document that you didn’t understand? What still doesn’t make sense about this form? What information do you think is most important? Why?For CHWs: Are there parts of this document that you don’t fully understand? What parts are difficult to explain to your clients? What information do you think is most important? Why? What information is unnecessary?For SSPs: Are there parts of this document that you don’t understand? What information is most important to you? What parts do you imagine are difficult for applicants to understand and navigate? What information is unnecessary?
Affect/emotion	For applicants: How did you feel going through this form? Can you walk me through the process? Were there any questions that you did not want to answer? Did you decide to answer these questions; why or why not?For CHWs: How did you feel going through this form? Can you walk me through the process? Are there any questions that you wish were not included? Are there questions you wish were included? How do you imagine this form makes your clients feel?For SSPs: How did you feel going through this form? Can you walk me through the process? Are there any questions you wish were not included? Are there other questions you wish were included? How do you imagine this form makes your clients feel?
Representation	For applicants: How do you feel this form represents you? How does it represent your child? How does this form represent your family? Are there questions you think this form should have asked you?For CHWs: How (if at all) do you think this form represents you as a health worker/educator? How (if at all) do you think this form captures your role and your relationship to your clients? How do you feel this form represents your clients?For SSPs: How do you think this form represents you as a social service professional? How do you think this form captures your role and your relationship to your clients? How do you feel this form represents applicants?
Situations of use —understanding of the process	For applicants: Who do you expect to read this form? How do you think the information provided will be used? Do you think filling out this form will help you? What next steps do you anticipate?For CHWs: Who do you expect to read this form? How do you think the information provided will be used? How do you envision this form helping your client? What next steps do you anticipate in this process?For SSPs: Now that this form is filled out, what do you do with it? How will the information provided be used? Who else reads this form? Who else uses it? Can you describe to me the life cycle of this form? What does it do for you and for the applicant?

Note. This table summarizes the questions asked to parent applicants, community health workers, and social service staff in artifact-based interviews. CHWs = community health workers; SSPs = social service professionals.

Data Analysis

I analyzed my field notes using open coding that inductively identified and grouped emerging themes from the data. In my first phase of open coding, I coded field notes from 26 application-writing sessions. I coded discrete moments when applicants disengaged from the application writing process. (Disengagement happened when an applicant did not understand a question, expressed anxiety about the perceived content of a question, or disagreed with the perceived intention of a question.) For example, initial codes included the following:

Confusion: What is a social worker?

Securing a Diagnosis

The WCAG required applicants submit a medical diagnosis of autism. Many participating parents, however, arrived at Midnimo without a diagnosis but with lived knowledge that they had a child in need of support. The requirement to secure a diagnosis rewrote participants’ caregiving practices and understandings of disability along individualized and medical lines. At Midnimo’s first autism workshop, I observed Molly, a community health worker, and Khadija, a Somali parent, move through the first questions on the application and pause at the “Eligibility” section, which read, “Must have a diagnosis of Autism Spectrum Disorder or related condition”

“They don’t have autism,” Khadija told Molly.

The following week, Khadija returned to Midnimo with a plastic bag of medical documents she gave to Molly. Molly used the documents to write and submit Khadija’s application, which was rejected for not presenting a “related condition.” Although Midnimo staff continued working with Khadija, she eventually left the WCAG program.

Khadija’s experience illustrates how the WCAG application defined disability in ways that could alienate otherwise invested applicants. The collection of these moments—Khadija’s disconnect from her children’s medical diagnosis; Khadija arriving with a plastic bag filled with medical documentation—illustrate that Khadija could not translate her experiences into medical and bureaucratic discourse. Thus, the WCAG alienated and silenced persons around whom the WCAG, as a person-centered application, should center. In interviews, participants like Khadija recalled initially seeking services because their children were “different” or had a “sickness,” often “our community’s sickness.” Participants rarely recognized specific, medically named disabilities. Many participants were unfamiliar with practices of securing a diagnosis, calibrating a diagnosis through physical, mental, and emotional tests, and tracking progress. As one participant explained, “Every child has his own clinic file, he has a weight percentile, he’s normal or not, and everything is tracked. It’s useful, but it’s also—it makes you nervous, sometimes for no reason.”

For many participants, the standardization of bodies against and within which disability is measured and named was a new way of relating to disability and to the bodies and behaviors of their children, whose physiological lives had previously fallen under the unmeasured and private category of “sickness.” Thus, what began as “sickness” was recoded as “disability” and reattributed to a specific diagnosis. Medical diagnoses and their power within social services remapped parents’ experiences of disability and community along Western, scientific-medical, and individualistic lines and redistricted coalitions of parents who had identified as sharing the experience of raising “sick” children. Khadija, for example, not only abandoned the grant, but also left Midnimo—that is, Khadija accepted the county’s ruling that she was not a part of her former community, Midnimo’s autism parent group.

Negotiating Confidentiality

To represent and analyze the confidentiality impasse, I introduce Sofia’s story of struggling against the WCAG’s requirement that she write about the stresses her son brought unto her family. Sofia’s reticence and eventual refusal to submit her WCAG shows how the WCAG’s deficit-based approach to disability coupled with the grant’s assumption that applicants trusted institutional representatives with personal information culminated into an impasse for Somali applicants.

When Sofia, a Somali woman who worked as a registered nurse, met with Nimo, a community health worker, to write her WCAG, she explained, “I have a four-year-old son, Isse, and he has autism. And one thing I should say is that confidentiality is important to me. My husband is not ok with the diagnosis.”

When Nimo promised confidentiality, Sofia agreed to write her WCAG. Sofia wrote until she reached the question, “Are there significant behavior disturbances affecting family life?”

Sofia said, “My son has only been diagnosed for eleven months, and already I’ve answered this question many times.”

When Nimo prompted Sofia with examples of how she could answer, Sofia clarified that it wasn’t that she didn’t know how to respond, but she bristled at how the application assessed her son:

Sometimes I want to think about his strengths. It’s how, well, my older daughter has trouble relating to Isse, so I try to really talk about all the ways he’s his own person—like when my older one does a good job washing her hands, I’ll say, “Oh, you’re doing an Isse wash, huh?” and I mimic how Isse washes his hands, very well, and then my older daughter laughs and laughs. […] I just point out things, like, “Doesn’t it make you smile when Isse does that?”

The following week, Nimo went to the social service offices with Sofia’s question. I was at the meeting when Nimo asked Amanda, a WCAG administrator: “I have one client, she’s worried that a SMRT diagnosis would stay with her son forever—”

Amanda interrupted: “Stay with her son?”

The confidentiality impasse, represented in Sofia’s story, arose from unstated assumptions about how raising a disabled child affected family life. The WCAG was based in a medical understanding of autism as a permanent diagnosis arrived at through medical screening. Tied up in this understanding was the belief that disability was a stressful project for families. Accordingly, questions on the WCAG sought to measure how a child “disrupt[ed] family life.” Relatedly, county staff often instructed parents to describe a child “on his worst day.” A social service provider explained this strategy helped applicants access all the resources for which they were eligible. This approach, however, also meant that to recover financial supports that might make family life less stressful and help a child thrive, parents like Sofia often found themselves in the untenable position of devaluing the lives and characteristics of the children they sought to support.

Somali participants also reported fears that describing a truly stressful day could compel a case manager to report a family to Child Protective Services. Although no participant had faced legal action regarding her parenting, the frequency with which participants described such fears demonstrated that the perceived threat of child separation was real. As women of color and immigrants, participants were more likely than White mothers to face legal scrutiny. This routine instruction therefore did not account for the structural vulnerabilities that contoured Somali mothers’ decisions and risk evaluations. The WCAG assumed homogenous applicants who understood disability as a straightforward medical status and who trusted state entities as neutral, privacy-honoring parties. The WCAG application therefore alienated participants who resisted medical, deficit-based understandings of disability or who feared unjust legal condemnations of their parenting.

Responding to Rejection

The confidentiality impasse showed that the WCAG application requested applicants report family stresses, a line of questioning that implied that the more stress a family experienced, the more eligible families were for funding. Yet, as this third impasse will show, WCAG funding was not awarded exclusively on need but on applicants’ plans to use the funding. Although the WCAG was presented as a person-centered application designed to support applicants’ self-identified needs, only goods, services, and providers that aligned with medical definitions of disability and state-sanctioned programs could be funded. In this section, I analyze representative examples from county staff persons’ instructions about how to request services and goods. These examples show that the WCAG’s invitation for applicants to request and justify services necessitated specific literate practices that involved applicants as coauthors who authorized modes of institutional expertise and caregiving.

The WCAG application asked individuals to request services and goods and to describe how these services and goods “are related to disability.” Parents arrived at Midnimo with plans for how they would use WCAG funding. One participant planned to take her children on their first vacation. Another hoped to travel with her daughter to Kenya and visit her sick mother. A third participant wanted to help her son improve in school with tutoring, while her friend had plans for a summer enrichment course. One mother requested money to help pay rent.

None of these applications were approved.

“These grants,” I listened to a grant administrator explain to parents assembled in Midnimo’s conference room,

[M]ust provide something enriching to your child, and that something must be related to disability. Something that is hard for your child because of his disability. Maybe he can’t take a swim lesson because it’s too noisy, but he could take a swim class designed for kids with autism. So, you identify what you need […] and then you ask what disability goals this service will provide. How will this staffing help this person become independent? Start with a long-term goal. Then break that big goal into little steps. Then, make the little steps measurable.

At a Midnimo workshop, Annelise, a social service provider, answered parents’ questions about their plans. When one parent asked why her tutoring request had been denied, Annelise responded, “We don’t do tutoring. That falls under the Parent Responsibility Factor […] Tutoring isn’t disability-related. It’s outside of our services.”

When another parent asked why her attempts to enroll her child in a summer camp had failed, Annelise explained:

It comes back to the Parent Responsibility Factor, which is basically an assessment of what’s a typical parent responsibility and what is above and beyond. If you’re asking for money for a typical parent responsibility, like feeding your children, then social services will not do that […] we can’t pay for you to go on a family vacation, but we can pay for you to get adaptive equipment to take your child on vacation.

Not surprisingly, participants often failed to write plans that fit the county’s requirements. While social service professionals claimed that the WCAG functioned as a person-centered application because the applicant could name her terms rather than choose from a set of county-authored options, Somali participants explained in interviews that they would have preferred to have been presented with a list of fundable resources. Instead, they received three open-ended questions, for which their supplied answers were denied or returned with requests for revisions. Furthermore, three out of this study’s six funded applicants (see Table 2) were only granted the WCAG’s most easily acquired service: a one-time, $600.00 payment for informal caregiving. WCAG administrators could award applicants whose children met diagnostic standards $600.00 without involving a fiscal agency. This outcome suggests that the WCAG’s emphasis on choice coupled with its reliance on culturally specific understandings of disability could and did paralyze applicants less familiar with available resources. As one Somali participant explained: “It’s not the county’s fault, it’s just that I don’t even know what to ask for.” The WCAG, because it did not provide parents with options that the county would fund and because it relied on implicit cultural assumptions about disability, parenting, and care cornered culturally different applicants into the only service for which they could make a convincing-enough argument: the $600 lump sum that could be spent, essentially, on babysitting.

OPEN IN VIEWER

Table 2.

Types of Impasses.

Type of impasse	Number of participants who stopped at this impasse	Number of participants remaining in the WCAG grant program (out of 26)
Securing a diagnosis:Diagnosis is not ASD or related orNo medical diagnosis (or plan to seek one).	8	18
Negotiating confidentiality:Applicant does not submit application because she is not confident her identity and identifying information will remain confidential.	4	14
Responding to a rejection:Revised plan is requested, and applicant does not submit it orPlan is rejected.	5	9
Following the plan:Plan is approved, but applicant does not use granted funding (e.g., cannot access funding, does not hire a support staff person) orPlan is approved, but applicant does not submit proper reporting, and funding is paused, delayed, or stopped.	3	6
No impasse:Applicant is granted and uses funding.	N/A	6

Note. This table lists the reasons that participants did not successfully complete, submit, and use their WCAGs and enumerates how many applicants stopped at each impasse. WCAG = Wingham County Autism Grant; ASD = autism spectrum disorder.

Following Reporting Procedures

This normative valuation of self-sufficiency extended to parents, whom social service providers taught to document, manage, and report on their care providers’ pay and performance. The following examples exhibit how the WCAG’s procedures trained parents to adjudicate over individualized, transactional relationships.

Annelise described to parents the different professionals they should involve in their efforts to coordinate WCAG funding:

If you get funding, you’re going to get a new case manager […] Your case manager will work with you in a crisis, will monitor your plan, authorize services, and assist you. Then, you’ll need to select a Fiscal Support Entity, or a FSE, and they’ll provide monthly spending reports, and they make sure everyone gets paid. Never contact your case manager about payment. Always call your FSE. Never call your FSE in a crisis. Call your case manager. We like clear boundaries.

Because person-centered grants such as the WCAG are unique in allowing grantees to employ family members as paid staff, these functional and highly coordinated relationships extended to the management of family members. Grant administrator Lynn explained to parents how they should pay their family members:

Minimum wage is 12 dollars. Maximum wage is up to $17.40 […] Your sister may say, well I can get paid up to $17.40, so give me $17.40. What PCA gets paid $17.40? None. So you want to start at that lower amount. And then, at the end of the year, there’s a raise, so account for that. Pay has to be based on knowledge and skill. You’re not going to pay the same to someone who got fired from Burger King as someone who has worked at a nursing home for two years.

Jenn offered one more management instruction to parents:

You want to have a plan to make sure the person you hired is actually doing the job […] Say you have people over for a football party, and everyone is grabbing food from the fridge, and you have your staff there to watch your child, and your staff starts work at 9pm. Then, it’s 9:05pm, and your staff is grabbing a snack. You can say, hey, look at this form we both signed, we agreed that you start work at 9pm, and I’m not paying for you to grab a snack.

Integration of Participatory Design

For social services, a person-centered process allowed the applicant to choose disability-related, medically approved resources and care providers. In technical communication, however, a person-centered process is informed by users’ involvement in all stages of development. The goal of designing for cross-cultural accessibility is not to allow diverse users to access a preexisting service but to create a production space wherein diverse users can codesign, participate in, and coproduce social service infrastructure. In a Midnimo staff meeting, staff members expressed the consequences of design processes that do not involve a range of users. At this meeting, staff members discussed the WCAG process as incomprehensible and unchangeable:

Malyun: The thing is, the county won’t change. Their papers are gods to them. I can read English, and I can’t figure out the forms. The forms were not designed for us. If you’re not White, middle-class—

This conversation demonstrates that intended users did not experience the WCAG as a person-centered process. As Rose (2016) has written, human-centered design “represents a broader conceptualization in regards to the design of information,” one that asks, “how is the world being designed, who is doing the designing, and what is the impact? […] Who, either by intention or by design, is being left out?” (p. 428). Within this framework, inclusive design must involve representative user groups that include users with disabilities (Zdenek, 2011) as well as culture and language differences (Palmeri, 2006). Person-centered design would necessitate a ground-up reworking of the original WCAG document that starts with the needs of real users in real situations.

The fact that the county predefined “person-centered” as a choice-driven, self-directed model of care that relied on medical records, goal-oriented plans, and contractual relationships delineated that culturally hegemonic ideas about disability, family, and care would persist. By extension, nondominant knowledges, practices, and literacies would remain marginalized. Integrating user involvement into the ground-up creation of a grant program would engage users not just as targeted audiences of a finished product but as valuable, problem-defining experts in their own lives who could contribute to the design of the application, its terms, distribution, and usage.

Attunement to Multiple Literacies

Social service providers emphasized the WCAG offered newcomers a low-stakes application procedure and introduction social services. This study, however, showed that applicants who did not write successful applications did not revise their applications but left the process. Why didn’t the WCAG offer applicants a writing-to-learn experience? The WCAG necessitated bureaucratic literacy practices that did not converge with Somali participants’ literacy practices. Participating parents rarely wrote their own applications, and some participants delegated writing entirely to community health workers. Many Somali participants grew up in an oral culture and did not relate to writing as a technology that could stand in for their voices. Meanwhile, the WCAG relied on an applicant’s ability to express, in writing, intimate details about her family, to compose a sophisticated funding plan, and to enter a system run by texts and written reporting protocols.

This disconnect points to a need for research and inventive work into how social service documents and processes can engage different, especially oral, literacies. As is, the WCAG was not person-centered for users who did not experience writing as an accessible mode of learning, self-expressing, and communicating. In addressing international and cross-cultural healthcare documentation, it is critical to interrogate the broader ways literacies, especially written literacies, are culturally dependent (see, e.g., Sun, 2012). Person-centered global communication must consider both if users can read the words on a page and how users relate to writing as an expressive technology and social relationship.

Untapped Opportunities for On-the-Ground Feedback

The disparity in answers to the interview question “How do you expect this application to be used?” between applicants and social service professionals demonstrated applicants had little insight into the audiences and rhetorical situations they were addressing. In writing their WCAGs, applicants provided personal information about employment, marriage, health, and family life; in return, applicants received form letters from the county notifying them if their application had been accepted, denied, or had led to a request for more information. These letters revealed little of the review process.

Beaufort’s (2000) research on writing to learn has shown professional writers succeeded in their organizations when they could access context-specific, insider knowledge into the “big picture” of a writing task: a document’s readers, situations of use, and systems of evaluation and decision-making (p. 211). Applicants in this study had no sense of the WCAG’s big picture—its audience, evaluative process, or shared goals. Thus, their writing rarely resulted in action. The act of writing a WCAG application functioned instead as a reminder of applicants’ outsider status.

Breuch, Bakke, Thomas-Pollei, Mackey, and Weinert (2016) offer a relevant model for how feedback and information-sharing can be transformative yet not necessarily resource intensive in high-stakes bureaucratic healthcare processes. The research team conducted a pilot study of OpenNotes, a program that grants patients access to their physicians’ unmediated notes. The study found OpenNotes improved the patients’ hospital experiences. Patients reported feeling more involved in their care and more informed in their decisions. Unlike participants in this study, patients in Breuch’s study felt less like outsiders. Information-sharing and on-the-ground feedback can facilitate communication and collaboration between groups who occupy different, hierarchical positionalities and practice divergent literacies and languages—in Breuch’s study, hospital physicians and patients; in this study, Somali applicants and social service professionals.

Bloom-Pojar (2018) has found that when groups from different linguistic and cultural backgrounds must communicate toward shared goals, their ability to effectively communicate across differences depends on their ability to build relationships, that is, “to feel solidarity in their struggles with language variation, and preserve toward new forms of communicating and problem-solving” (p. 23). Feedback can denaturalize bureaucratic literacy and its reliance on disembodied communication and engender a more relational and reciprocal process. What would an information-sharing initiative look like in social service programs? This question requires further research, but my study provides evidence that (a) applicants wrote blindly into undisclosed rhetorical situations, which (b) alienated members of already underserved populations, and (c) a key moment of alienation happened when applicants’ written applications were denied for unclear reasons.