Abstract
Specific actions like marriage, higher education, employment, living alone, etc., only partially define adulthood. These actions must also be performed correctly so that others recognize them as legitimate. Actions are legitimate when they take into account the person's responsibility to be self-motivated, responsible, and productive.
Keywords
When Janice, a social worker, visited Ann’s apartment Wednesday evening, Ann welcomed her into a dark apartment dressed in pajamas, a sign Janice took to mean that she had just woken up. Ann was excited to report that today was the first day of a three-day “vacation” from work. As Janice recounted this story at a staff meeting, her coworkers shook their heads in disapproval. “I asked her, do you think you can just take a vacation?” Working through her frustration Janice added that she assumed Ann only worked Monday and Tuesday because she needed 24-hours’ notice to cancel Paratransit (a public transportation service for people with disabilities), something she couldn’t do over the weekend while the office was closed: “She is unbelievably smart.”
As an outsider listening to this conversation, I was confused. What was wrong with Ann? From my point of view, she had acted responsibly: requesting time off in advance and abiding by Paratransit’s cancellation policy. Like Janice said, Ann is unbelievably smart and, in my view, responsibly managing her commitments to her employer. How is it possible that the staff around me came to the opposite conclusion?
To a suggestion that Ann may have needed a “mental health break,” Janice responded quickly, “I have no sympathy for her because she just got back from Aruba with her mother.” Against this backdrop, cancelling Paratransit and taking a “vacation” is evidence that Ann has not fully internalized the expectation that adults be productive and self-disciplined.
Ann lives in an independent living program for adults with intellectual and developmental disabilities called Moving Toward Independence in Community (MTIC) (all names have been changed to protect confidentiality). The purpose of the program is to provide these adults with training and support in the activities of daily life, things like cooking, cleaning, employment and social skills. Participants, ranging in age from 21 to 50, have mild intellectual and developmental disabilities and live in their own market-rate apartments around a small northeastern city. For eighteen months, I observed staff meetings, weekly appointments, and community activities where I witnessed staff training participants to be “independent adults.”
While the program explicitly measures independence by the ability to perform the activities of daily life (i.e., cooking, cleaning, caring for the self), I will show that successful adulthood is actually a continuous achievement, where program participants demonstrate their responsibility to act according to a set of normative expectations about adulthood.
Adulthood is a catch-22: it is defined by one’s independence from others, and yet, to be considered an adult, you are obligated to perform the duties of adulthood. For many participants at MTIC, this feels like work or “a job.”
Sam Wedelich
Adulthood and the Life Course
Life course researchers call these expectations the “transition to adulthood,” a series of age-graded transitions that likely sound familiar: graduation from high school and college, living away from parents, financial independence, marriage, parenthood, etc. This literature treats adulthood like an accomplishment and describes people who miss a stage (i.e., high school dropouts, the underemployed) or complete them in the wrong order (i.e., single mothers) as having failed the transition to adulthood.
Young adults with disabilities in particular have been described as failing the transition to adulthood because they are less likely than their nondisabled peers to be employed, live alone, have romantic relationships, pursue postsecondary education and training, or engage with their community. For groups like these, treating adulthood like an accomplishment is infantilizing because their ongoing need for support in daily life suggests that they may never become adults. In response, some researchers have suggested alternative measures of successful transition for people with disabilities, like having a functional role in society instead of employment or living away from a caregiver instead of living independently. Others, like Jennifer Silva, argue that how people come to understand themselves and others as adults matters more than their success in achieving adult milestones.
The truth is, I am never going to give you a break because I know you are capable of more… Stage one is independence, stage two is integration, stage three is to have a purpose.
I agree with Silva and use research on the transition to adulthood to define what I call cultural adulthood, the social expectation that adults will be responsible and independent. Drawing on this research and my own fieldwork, I argue that MTIC defines adulthood as a state of growth in which staff teach participants the skills associated with cultural adulthood and train them to adopt a sense of responsibility to be independent. In this frame, participants are considered adults when they demonstrate continued interest in becoming independent, regardless of their actual capabilities.
Methods
MTIC is a private-pay program designed by a set of 10 upper-middle to upper-class parents who were unsatisfied with the independent living options available to their adult children. Today, the program supports roughly 56 adults in a small urban city. While MTIC, a relatively wealthy and overwhelmingly white group of intellectually disabled adults, is not representative of the larger population of people with disabilities, the program provides a unique window into the work that underpins independence and adulthood. First, because families at MTIC are relatively wealthy, they have been able to design and pay for an independent living program that is not common in the United States. Second, because participants have only mild disabilities and are able to live independently with minimal support, their interactions with staff make the otherwise invisible work that underpins adulthood visible.
My argument draws on 18 months of ethnography at MTIC where I observed weekly meetings between program participants and their social workers, job training internships, and various community activities (i.e., holiday parties, monthly dinners, trivia nights at a local bar, etc.).
I suggest a framework for understanding adulthood as a state of growth toward ever increasing independence. To explore this topic, I identified instances in my field notes where staff identified problems in a participants’ behavior, or, moments where staff felt participants were failing to be independent. I focus on areas of failure for two reasons. First, it was often difficult to see success. By default, staff members worked with participants to train them to do things they were not able to do. Moments of success fell to the background because it was no longer part of the program’s daily work. Second, by following failure over time, I was able to see success emerge. This allowed me to follow projects of adulthood in which staff defined success and failure against each other. Looking at failure to define success is common in sociology, inspired in part by Erving Goffman, who identified what normal interaction looks like by analyzing moments when it breaks down.
The Ongoing Work of Adulthood
At MTIC, training participants to be “independent adults” is a two-part process that involves both teaching and training. When they use independence to talk about specific skills associated with adulthood—making decisions independently, exercising, cooking, cleaning, and maintaining social relationships—staff communicate a vision of adulthood where the traditional skills of cultural adulthood can be taught.
Interactions between staff and participants are defined in care plans that outline “concrete” and “measurable” goals associated with these skills. Long-range values, like maintaining a healthy lifestyle, are broken down into individual goals, like preparing and following a grocery list when shopping. As individual goals are met, they are revised to reflect a new state of independence: staff will no longer assist with grocery shopping but will prepare simple meals alongside participants after they have purchased ingredients on their own. Because long-range goals are formulated in very vague terms, the process of defining and revising goals is a never-ending one. This communicates to participants that independent adulthood is not a static state, but one marked by continual self-improvement.
Training is more involved. On the one hand, training involves applying the skills participants have learned and are learning to transfer them to new situations. But training also involves inculcating in participants a sense of responsibility to work. In short, while someone may know how to clean, this doesn’t necessarily mean they will do it. To be considered successful, participants must continuously perform the achievements of adulthood and communicate their intrinsic desire to do so.
Learning Adult Skills
The distinction between teaching and training is a gradual one described by the Office for People with Developmental Disabilities (OPWDD) as a series of stages that reflect psychological theories about learning and skill transfer: demonstration, hand over hand instruction, side-by-side instruction, verbal instruction, prompting, oversight of continued behavior, and finally mastery, a state in which a person habitually performs the task without prompting. Working through these stages can take months, and even years, like they did for Elise.
When I started observing the program, Elise’s apartment was in a constant state of disarray. She did not clean without intense prompting, and her mother often refused to visit except for a monthly “reset” during which she cleaned Elise’s apartment herself. Staff had minimal success teaching Elise how to clean.
While MTIC’s participants often need support to complete daily tasks like cleaning and cooking, they are still considered successful adults as long as they internalize the social expectation that adults will be responsible and independent.
Sam Wedelich
Frustration over Elise’s inability to learn how to clean came to a head at a care planning meeting early in my time at MTIC. As Elise sat across from me, slumped over the table, her staff members listed the deficiencies she showed in being an “adult.” Her apartment is messy, she doesn’t keep up with her cleaning schedule, and she refuses to cooperate with her caregivers. When the conversation paused for Elise’s self-defense, her mother interrupted, “You know what, I’m sorry. I don’t want to hear it Elise. We might as well play the tape from last year.” Citing a basic expectation of the program, that participants continue to work toward increasing independence, Alma questions Elise, “Do you really want to be here?” Elise nods. “Because we are all working really hard to keep you here and you are not doing your part. We all have our role to play. But if you don’t do your part, it falls apart. If you want to stay at MTIC, it’s entirely up to you.”
Later in the meeting, Elise’s mother summarized what she sees as the deeper issue behind Elise’s failure, “Independence is not a permanent vacation.” In saying this, Alma illustrates how Elise’s claims to independence are misplaced. When she refuses to learn how to clean her apartment, exerting her right to independence from intrusion in her daily life, Elise also rejects the cultural expectation that she maintain a clean home and keep a regular schedule. She is caught in a catch-22: she claims independence, but no one will give it to her until she directs it toward the cultural expectations others have for her adult life.
About halfway through my fieldwork, Elise began working with Judith, a particularly persistent direct support worker. Judith began the painstaking process of teaching Elise to clean by visiting her for two hours every weekday morning during which she physically demonstrated how Elise should clean her bathroom, vacuum, run the laundry machine, and make the bed.
After they had been working together for several months, I joined Judith as she followed Elise as she worked through her daily cleaning routine. About 30 minutes in, it came time to make the bed. As stated in her goals, Judith walked Elise through the process. As they circumnavigated the bed together, Judith provided verbal prompts as to the steps she should take, stood behind Elise to get a good vantage point, and pointed over her shoulder to wrinkles that remained. When she was done Elise stood back, held out both hands as if to present a masterpiece, and exclaimed “There!” As if accepting an invitation, Judith stepped forward to inspect the bed, “That’s good!” As she encouraged Elise, she tucked in the sheet that was hanging down the side, straightened the wonky comforter, and fluffed the pillows, placing them neatly on top of one another. As Elise left the room to get her vacuum for their next task, Judith turned to me, “She really is good, it’s just that last little bit she can’t quite get, I do that.” Throughout the rest of their routine, Judith provided minimal physical assistance as she prompted Elise through her list of tasks, “What’s next?” I continued following Judith and Elise over several months as Judith disappeared further into the background and eventually left Elise on her own while she was on a week-long vacation.
Shortly after she returned, Elise had a care planning meeting during which staff reviewed her progress. Her social worker, Kira explained that they planned on revising several of her cleaning goals because, “Elise knows how to clean.” Speaking to the group Kira explained that prior to her vacation, Judith had created a detailed cleaning chart for Elise to follow. A palpable tension in the room diffused when Kira announced, “She did it!” Elise’s face brightened as her mother, Alma, turned to her for a high-five. Kira let the celebration continue for about a minute before continuing, “I was really worried.” Alma agreed, “I was too, I didn’t go near the apartment that week,” and continued explaining how this lifts a strain off her relationship with Elise. Gently bowing her head, Elise accepted her accolades, “thank you.”
Noting that Elise’s “only problem is follow-through,” Kira outlines how they will revise her goals, “Like we discussed, in the morning with Judith you will put reminders in your phone. In combination with the chart, that can help. And we can oversee [the chart].” Reiterating how proud she is, Kira reminds Elise about her reluctance to work with Comhab, “you say you don’t want the oversight, but you need to do it for more than just one week.”
At care planning meetings, or Individualized Support Planning (ISP) meetings, participants often become uncomfortable with the tensions between their right to independence and the expectation that they will behave “like adults” by submitting to the efforts of staff to train them.
Sam Wedelich
In defining the distinction between teaching and training, Kira points to an important insight about adulthood, that it is not a continuum of function (i.e., knowing how to clean) but a continuum of disposition, the willingness to continue doing those things through a changing social landscape. Refusing a disposition to training is failure, not the inability to keep a clean apartment. Legitimate claims to adulthood must take both of these into account: a person’s capacity to act independently of other people, what I call cultural adulthood, and their internalized interest in doing so, their disposition to adulthood.
Dispositional Adulthood: Doing Things You Don’t Want to Do
This way of framing adulthood as an ongoing project came into sharp focus in Brendan’s semi-annual care planning meeting. During several “lazy” days off from work Brendan became lethargic, avoiding social activities and exercising very little. He had fallen out of his routine and slipped into old “anti-social” patterns. After an exhausting few minutes outlining his failure Brendan’s mother, Daphne, turned to him and noticed that he was getting upset, “Its okay. Everyone here will say, if they have nothing scheduled for a particular day, they will do nothing.” Several staff members nodded their heads, noting that they also have a hard time thinking of things to do on their days off. His mother continued, “We will work on it okay?” Brendan responded, nodding his head slowly, “I understand. I want to actually.” Despite his apparent desire to change his daily habits, Brendan’s demeanor was subdued, his body still, head down looking at the table. Daphne continued, trying to soften the pressure for progress by documenting the things he is strong in, “Listen, I was just in your apartment, it’s very clean, cleaner than your brother’s room, you have good food in the fridge.” Ari, Brendan’s father, spoke of progress more explicitly, “The truth is, I am never going to give you a break because I know you are capable of more. You were the only one of your brothers that got your mom a card and a gift early. [Your older brothers] forgot, I had to get Eli’s but he is only 12.”
When they pause to give Brendan a chance to speak, he voices his dejection for the first time in today’s meeting, “It just makes me feel worthless.” Ari responded quickly, “Brendan, you are not worthless, but I will not let up on you because that’s my job.” Ari continues, comparing Brendan to their neighbor’s children with “profound disabilities” who are unable to accomplish many of the things they are asking of Brendan, “The fact that I can use the word profound and you understand it is an indicator of how much you are capable of. You are great at your living skills; not only are you independent, but you are a member of a community.” While everyone stares at Brendan, Ari summarizes his expectations, “Stage one is independence, stage two is integration, stage three is to have a purpose.”
When Ari frames his expectations for Brendan this way, he signals that adulthood is not static. Even after Brendan achieves independence in the markers of cultural adulthood, he still has work to do. Unlike concrete skills of independence, like cooking, cleaning, and caring for the self, integration and purpose require constant calibration to changing abilities, relationships, and circumstances. Being an adult means that Brendan will engage in continual training to craft his independent living skills to changing circumstances (i.e., weekdays to weekends, employment to vacation, life lived with others or in isolation. What Ari is talking about here, and what the program implements through their care planning, is a total orientation to life in which independence and adult identity is constantly evolving.
Defining Independence at MTIC
In my ongoing conversations with participants at MTIC, I would often ask why they liked living in the program. Most replied by simply asserting their desire to be independent. When pressed to elaborate, new participants often defined independence as “doing what I want,” throwing their hands in the air and exclaiming, “Yay! I don’t have to listen to my parents!” This perspective was encouraged by staff who often remarked that the mere mention of a parent’s wishes, “hurts my ears.” In these instances, staff required participants to restate their interests as self-motivated before they would continue a conversation.
However, MTIC’s goal is not just to rid participants of the desires or oversight of their parents, but to supplant them with something else: an internalized knowledge of and interest in pursuing cultural adulthood, the generally accepted social expectation that adults will be responsible and independent. This explains why Ann’s actions, which on the surface look like responsible adult behavior, are used against her claims to independence and on the other hand, why actions that look like childhood can bolster adult status if they are performed in the correct way. In calling off from work in the days following a “real” vacation, Ann demonstrates that her disposition to independence is misplaced because it doesn’t reflect a responsible decision to work. Actions, no matter the content, are legitimate claims to adulthood if they represent a participant’s successful internalization of the social expectations for adult behavior and the translation of these desires as one’s own. To legitimize their claims to independence, people with intellectual disabilities also need to communicate their self-motivation to perform cultural adulthood. All this is to say that successful adulthood is not, as other research suggests, a continuum of capacity but a continuous achievement in which participants distance themselves from the support and guidance they receive from others.
Successful adulthood is a continuous achievement, where program participants demonstrate their responsibility to act according to a set of normative expectations about adulthood.