Why Do You Ask Why?: A Critical Phenomenology of Disability and the Burden of Justification

Abstract

This paper examines how asking “why” may function as a form of censorship that regulates the actions and desires of disabled people. We describe how one author’s life was transformed by 24 h personal assistance, which let her pursue activities “unnecessary for sustaining life” and “be picky about her daily routines.” Building on phenomenological research, we argue that the lack of discretion in homemaking alienates disabled people. While Independent Living with a personal assistant enables homemaking that reflects personal preferences, pursuing “unnecessary activities” or “pickiness” can be difficult because of the pressure to explain reasons to caregivers. The author developed a habit of explaining her reasons—often initially or excessively—from a lifetime of interactions with non-disabled people who constantly demanded justification. This demand for explanation places a burden of justification on disabled people, censoring their “pickiness” or comfort by dismissing it as an “unnecessary luxury.” This “censorship of reasons” maintains the fluid flow of actions conducted by non-disabled people within an ableist society. The recognition of this creates a space for reexamining able-bodied normalcy and the excessive fluidity expected within ableist social structures.

1. Introduction

Disabled people are often asked why they do or try to do something. This act of asking why may seem casual, banal, and neutral. However, is this really the case? This study describes the experiences of one of the authors, Yuda, a person with a disability, and uses critical phenomenology to examine the politics that underlie the act of asking why.

Unlike overt forms of discrimination, such as admission refusals or marriage discrimination, being asked for reasons is an everyday occurrence, making it an elusive phenomenon and leaving those who are asked feeling unsettled. In this context, the critical phenomenological approach would be meaningful. This is because critical phenomenology questions the structures that render such everyday experiences “ordinary” and constitute what is “normal” for non-disabled or disabled individuals.

As Guenther [1] argued, critical phenomenology is “a practice of suspending hegemonic ‘common sense’ accounts of reality to reflect on the conditions of lived experience and the lifeworld in which it unfolds” ([1], p. 6). It describes, interrogates, and “ultimately transforms the contingent, historical, yet quasi-transcendental structures,” [1], including “colonialism, anti-Black racism, and heteropatriarchy” [1]—we add ableism here—which condition the meaning of our experience. Thus, critical phenomenology begins with a close description of one’s lived experience while suspending the public sense of it and then analyzes the structure of its occurrence, including the power structures that are not immediately apparent.

Wieseler [2] examined able-bodied individuals asking questions to disabled people and pointed out that able-bodied individuals regard personal, sensitive questions as justified, highlighting the underlying power dynamics. This justified sense of entitlement in asking, rooted in power structures, is highly significant for our research. While Wieseler highlights how curiosity can obstruct action and force disabled people to reveal their intimate information, this paper addresses different types of questions: questions that inhibit action through censorship.

We turn to individual accounts without initially using pre-established notions of discrimination. This has enabled a more nuanced understanding of how social structures of disability discrimination influence personal structures of experience, and how these structures generate the individual’s meaning of experience.

The distinctive feature of this study is the collaborative analysis between a disabled person and a phenomenologist. Yuda is a disability studies researcher with spinal muscular atrophy (SMA) type II, a condition that causes muscle weakness throughout the body. She lives with 24 h assistance. The description of her lived experience may allow deeper reflection on our daily actions, feelings, and senses, which are often disregarded by those who “fit” in Garland-Thomson’s sense [3]. The other author, Sakai, is a non-disabled researcher in phenomenology (who has no experience of receiving assistance). This collaborative analysis offers two advantages. First, it avoids objectifying a disabled person and using them as material for testing hypotheses. Second, it helps both authors recognize the actions and feelings they typically overlook and reflect on their formation and impact. In other words, the differences between the two authors allowed both to bracket the worldly sense of phenomena.

The remainder of this paper is structured as follows. Section 2.1 describes Yuda’s experience of the differences between life at her family home and living on her own with support from personal assistants. In Section 2.2, by referring to the discourses of “homemaking” in phenomenology, we confirm that “homemaking” and a person’s “こだわり [kodawari]”, which means “pickiness” in Japanese, are important to an individual’s identity and comfort. Section 3.1 focuses on “being asked for a reason” to justify one’s actions, which becomes an obstacle when disabled people show “pickiness”. It describes experiences, including Yuda’s own, of disabled people being asked why in various situations. In Section 3.2, we introduce Mills’ concept of the “vocabulary of motive,” and in Section 3.3, we further identify differences in the vocabulary used by disabled and non-disabled people, and examine the messages implied in the act of asking for reasons. Section 4 notes that questioning functions to preserve the “normality” and fluidity of the ableist society.

2. A Life Pursuing Personal Passions

2.1. Changes Enabled by Independent Living

As mentioned earlier, one of the authors, Yuda, has a physical disability called spinal muscular atrophy (SMA), which is a progressive, congenital disease that causes gradual muscle weakness throughout the body and is classified as a motor neuron disease. Owing to muscle weakness and atrophy, she requires assistance for nearly all daily activities, including changing clothes, using the restroom, turning over in bed, opening a plastic bottle cap, and lifting and drinking from it.

Until 2016, she lived in her family home in Fukuoka Prefecture with her grandparents, mother, and younger brother, primarily receiving assistance from her mother and grandmother. After entering university, she began living on her own in Kyoto and used government-provided care services.

In her daily life, a personal assistant is with her 24 h a day. In her case, about 10 personal assistants come to her house on a rotating schedule each week. In this system, the disabled person contracts with an agency that dispatches caregivers to their home. The government then pays the agency based on the hours of care provided.

In the context of the disability rights movement, the kind of life she leads is called “Independent Living.” Independent Living is defined as “a way of life where individuals with severe systemic physical disabilities requiring assistance in daily living conduct their lives fundamentally outside of institutions and without relying on family members or family-employed caregivers” ([4], p. 520–521). For many years, disabled people have been forced to live with their parents or (when family caregiving reaches its limits) in institutions. In Japan, over half a century ago, pioneers with disabilities challenged this situation and acquired the “right to live in the community.” They aimed to escape oppressive environments like parental homes and institutions, and practiced Independent Living within the community while receiving assistance. They aimed to take the initiative in managing their own lives through their own responsibility and will.

Comparing her life at her parents’ home, where she received assistance from family members, with her current life, where she receives assistance from professional caregivers (personal assistants), there are many differences. Because the person assisting Yuda shifted from a family member to professional caregivers hired through a contract (personal assistants), as a service user, she has been able to receive assistance that better reflects her needs1. In particular, the most significant difference, she feels, is whether she can pursue activities “unnecessary for sustaining life” and “pickiness”. When she was at her family home, she had to ask her family for assistance, but she could not communicate all her needs. While it was easy to ask for things of “high necessity,” it was more difficult to ask for things that were not necessary. “High necessity” meant things like needing to use the restroom, wanting help because a part of her body hurt, or feeling too hot or cold. These were things that, if left unaddressed, would cause physical pain or make her feel unwell. Such requests were easy to make immediately, and her family quickly took action. However, for things that were not urgent (e.g., wanting to cross her legs differently or asking for a refill), she had to carefully consider the timing. When she asked for such things, her family would often respond (with an annoyed tone), “Ugh, now?,” “Ugh, again?,” or “Just wait a minute.”.

Furthermore, things that are not related to physical needs are given a lower priority for asking. What she particularly remembers is organizing her drawers. She loves to keep things tidy, but she was unable to ask her family for help. Hence, it was difficult for her to arrange her drawers the way she wanted. She also liked collecting postcards, but she found it difficult to ask family members to display them on the wall in the way she wanted. It was difficult for her to redecorate her own space as she wanted.

However, after she began living on her own with support from personal assistants, the situation changed. Naturally, she could immediately ask for non-essential (non-urgent) physiological needs, but it also became easier to ask for help with things unrelated to physiological needs. Among these, what brings her joy and a sense of freedom is being able to pursue “unnecessary” things and “be picky about something,” such as changing the orientation of photo frames or the placement of stuffed animals, rearranging books and flowers, two-step cleansing her face, performing meticulous skincare after bathing, or drinking tea from her favorite cups.

In the field of care for disabled people, these things are often dismissed when compared with urgent physiological needs. In the next section, we will explore the meaning of these “unnecessary things” and acts of “pickiness” through the phenomenological discourse of homemaking.

2.2. Disabled People and Homemaking

The significance of home and homemaking has already been noted in several phenomenological studies. Young, in particular, defines “[h]ome as the materialization of identity” ([5], p. 140), that is, home and homemaking profoundly constitute one’s sense of self and identity. She states: “[h]omemaking consists in the activities of endowing things with living meaning, arranging them in space to facilitate the life activities of those to whom they belong, and preserving them, along with their meaning” ([5], pp. 140–141). In other words, homemaking is the act of arranging and preserving things that hold personal meaning within the home, while simultaneously using those objects to support one’s habits and get one’s life on track. Thus, homemaking functions to support and express the identity of the inhabitants. Therefore, Young writes, “[g]iving meaning to individual lives through the arrangement and preservation of things is an intrinsically valuable and irreplaceable aspect of homemaking” ([5], p. 138). As Casey (cf., [6], p. 120, p. 179) notes, this process of materializing identity leads to a sense of comfort—in other words, a sense of at-homeness—within that space.

For a home to become a materialization of identity, the place in which the person lives must both support and express that person’s lifestyle through homemaking (here, this homemaking is not limited to its narrow sense—cleaning, laundry, cooking—but includes arranging things and taking care of oneself as one wishes).

However, homemaking, at least in institutional care (and often in family care), extends beyond the discretion of disabled people. Often, in cases of institutional or family care, insufficient manpower leaves little time to arrange homemaking tailored to each individual’s preferences2. Moreover, the caregiver’s pursuit of safety and efficiency usually takes priority, making homemaking dictated by the caregiver’s convenience. Here, criteria like “whether it feels comfortable” or “whether it reflects the individual’s preferences” become secondary. For example, in institutions including hospitals, the arrangement follows routines that are convenient for caregivers, not the habits of the individuals who receive care. This type of residence, in which homemaking is performed according to the caregiver’s way, forces the habits and lifestyle of the care recipient to conform to the habits of others (the caregivers). This type of homemaking fails to support and express the identity of the disabled person. In short, it does not make a home for them but instead reduces them to objects within their own residence, fostering alienation and discomfort.

By contrast, when living with personal assistants, the caregiver provides tailored assistance, including arranging furniture in the person’s home. In other words, Independent Living enables homemaking that reflects and supports the habits of the person receiving care, not those of caregivers. Indeed, when Yuda began Independent Living, she could engage in various homemaking activities that were impossible while living with her family.

Moreover, this lets Yuda pursue comfort through homemaking. For example, a difference in mere degrees in the angle of a stuffed animal or photo could determine whether her environment felt “just right.” Here, homemaking can be understood as including not only maintaining a house (the general meaning), but also caring for the self that dwells within it. In Independent Living, one can pursue “the aesthetic” in homemaking, including the methods of caring for oneself. Self-care involves actions to ensure survival (e.g., eating and drinking) and maintain hygiene (e.g., washing and moisturizing one’s body). However, these actions already contain, to a certain degree, aesthetic components reflecting personal “preferences,” like double cleansing or using favorite tableware. As Merleau-Ponty writes, “[e]verything is artificial and everything is natural in humans”3. Indeed, we can say that, in humans, every response to a need contains “unnecessary activities for sustaining life”.

In Independent Living, when caring for oneself, one can pursue the aesthetic that reflects one’s personal tastes and methods. In other words, one can choose and be particular about one’s way of self-care. Homemaking, in this broader sense, incorporates an aesthetic dimension; an aesthetic that is dependent on the person and not necessarily shared or welcomed by others.

As described above, Independent Living with a personal assistant enables homemaking, including personal care methods, and reflects personal preferences. While Young does not explicitly state this, homemaking can foster a sense of at-homeness, express and support an individual’s identity by incorporating their “personal preferences” or “pickiness.”4.

3. Requirement of Reasons for Disabled People

3.1. Asking for the Reason

For many disabled people, pursuing “pickiness” requires assistance from others. When living with personal assistance, they can be “picky.” However, transitioning to Independent Living does not mean they can freely pursue “unnecessary things” or “pickiness.” In Yuda’s case, while access to “unnecessary things” has increased dramatically compared to life with her family, her capability to pursue them in her current life still depends heavily on the caregiver’s way of accompanying5. This is because caregivers may feel that there is no “rational reason” for these “picky” requests, and thus may be reluctant to do what she asks unless she explains the reasons.

Here, we can note “pressure to explain reasons.” Since caregivers intervene in most of her actions, Yuda feels compelled to explain the reasons behind her desired behaviors to them (nevertheless, some caregivers do not require this). For physical needs, stating the “reason” for needing assistance is easy (e.g., “because it hurts,” “because it is tiring”). However, explaining the reasons for “mere pickiness” or “I just want to do it this way” is difficult. For example, why take a bath in the afternoon instead of at night today? Why make a detour to that place today?

What Yuda feels is a “constrictedness” that, unless she articulates the reason, and unless the caregiver accepts the reason, her requested action would not be carried out (by the caregiver). Yuda says, “I want them to do what I ask without needing to state a reason. However, stating a reason often makes things smoother and easier for the caregiver and for me, too. So, sometimes I cannot help stating the ‘reason’ first or excessively.” Thus, explaining reasons has been her “habit” to navigate her life.

While the above describes Yuda’s daily life with caregivers, this phenomenon of asking/being asked for “reasons” occurs across various situations and levels. As examples, we present two episodes Yuda experienced during a newspaper serialization.

Episode 1: “Why did you want to participate in off-campus events?”

This occurred while she was writing about her experiences with off-campus events in high school. In the draft, she described how, as a wheelchair user who required assistance, she faced numerous hurdles—such as overnight training sessions, baseball games, and school trips—and had to negotiate with the school to secure the right to participate. After reading her draft, the newspaper reporter assigned to edit it asked, somewhat innocently and almost as if testing her, “You were okay with just observing during physical education classes, right? Then why did you dislike not being able to participate in off-campus events? What is the difference?”.

Yuda’s initial draft had not explained why she disliked being excluded from these events. The reporter likely asked this question because she thought that if Yuda expressed a strong emotional reason, it would elicit sympathy from readers—something like, “Well, poor thing, we have to do something for her.”.

But fundamentally, whether Yuda wanted to participate in these events was not the issue. The real problem was that she had no choice (she was denied participation), and that was what she wanted to convey.

In the end, Yuda told the reporter that she would not write about whether she wanted to participate in the event or her reasons. They had a heated argument, and ultimately, Yuda’s point prevailed (or rather, the reporter may have given in to her stubbornness), and the draft was completed.

Episode 2: “Why do you want to avoid receiving assistance from the opposite sex?”

This occurred while she was writing about an experience during a consultation with a social worker as she was preparing to live on her own. In that draft, she wrote that the social worker had asked, “If we cannot find female caregivers, would male helpers be acceptable?” (Ultimately, enough female caregivers were secured, so assistance from men was not required.) Her first draft continued: “Being asked this made me confused and conflicted. Do I have to accept unwanted assistance from someone of the opposite sex just to survive? I have been struggling with this question ever since.”.

In response, the same reporter said, “It would be better to explain why you dislike assistance from the opposite sex. If you do not explain this, I do not think readers will understand.” Yuda was confused and wondered, “Is ‘no means no’ not enough? Do I really have to explain why I dislike it?” The reporter continued, “Is it acceptable if the doctor is male? How is that different?” and “Even if the caregiver is male, isn’t it fine since he is simply performing his job? How would you respond to such opinions?” While rewriting the draft, Yuda felt uneasy and questioned, “Even if I can provide a ‘suitable reason,’ is doing so really right? Does this mean that unless my reason convinces the majority, the claim that disabled people may dislike support from the opposite sex is unacceptable?” She did not want to provide a “reason.” However, the reporter insisted that “at least one sentence is necessary” to explain why she disliked receiving assistance from male caregivers. Reluctantly, she submitted the following line: “In daily life, being seen or touched by men—are these not simply unpleasant or frightening experiences for many women? Am I, as someone who requires assistance, not allowed to feel uncomfortable about things that other women naturally find uncomfortable?” After reading this, the reporter said the message was conveyed very well, and it was published.

The two episodes we have cited are based on Yuda’s firsthand experiences. Yet in many situations, disabled people are repeatedly asked for “reasons” that would never be demanded of non-disabled people throughout their lives:

“Why do you want to go to a regular school rather than a special needs school?”

“Why do you want to go to university?”

“Why isn’t the care provided by your family enough?”

“Why do you dislike living in an institution or hospital?”

“Why do you want to live by yourself?”

“Why do you want to bathe every day?”

“Why do you want to work?”

“Why do you want children?”

Matsunami [11], an expert in human rights education and disability studies, makes the same point. She cites a statement by a ventilator user: “We are really asked ‘Why are you here?’ a lot.” She notes that disabled people are frequently confronted with questions that are never asked of non-disabled people6, such as “Why would someone like you come to our restaurant?”, “Why do you want to live here?”, or “Why attend the local school?”([11], p. 45–46) She argues that these questions convey an implicit message: “People like you belong in special schools, hospitals, or institutions”—“an exclusionary attitude that denies their existence”([11], p. 46).

Ultimately, disabled people are even asked for a “reason” to live. A symbolic example is the Sagamihara Massacre, which occurred on 26 July 2016, at Tsukui Yamayuri En, a residential care facility for disabled people, in Sagamihara City, Kanagawa Prefecture, Japan. A former employee, Satoshi Uematsu, attacked the facility with a knife, killing 19 residents and injuring 26 others, including two staff members. Uematsu claimed that “disabled people can only create unhappiness” and that “people with multiple disabilities have no meaning in life and should be euthanized.” He carried out the attack based on these beliefs—beliefs that, horrifyingly, many social media users agreed with. In response, many people attempted to counter Uematsu’s views and the eugenic ideology underpinning them by arguing for the “reason” or “value” of disabled people’s lives: that “they can live happily,” “contribute to society,” or “bring smiles to others.” After the incident, the media was flooded with such arguments seeking to justify why disabled people are “worthy” of life.

In this way, disabled people are frequently asked to provide “reasons” in everyday conversation and media contexts. At times, they even pre-emptively offer “reasons” they think will satisfy the majority. And the majority, in turn, evaluates whether these explanations are “worthy” enough to count as legitimate reasons.

3.2. “Vocabulary of Motive”

Let us examine what it means “to be asked for a reason” through the case of the newspaper articles. The necessity to satisfy the majority through newspaper articles reveals a power structure in which permission to act is withheld unless that satisfaction is achieved.

In the earlier example, Yuda was required to justify participating in school events by providing the majority “convincing” reasons. (Likely enough, the reasons that are appealing to the majority’s benevolence). Meanwhile, the second example suggests that the avoidance of heterosexual assistance is not considered legitimate unless it persuades non-disabled people7.

For considering such phenomena, Mills’ concept of “vocabulary of motive” is useful. “Vocabulary of motive” refers to the idea of considering motives not as the “springs” of people’s actions or attitudes—that is, as something intrinsic—but rather “as the terms people typically use to explain their motives in interpersonal relations” ([12], p. 114–115), so to speak, as the social.

“They [vocabularies of motive] are internalized by the person and operate as mechanisms of social control” ([12], p. 117). Throughout our lives, others surmise our motives. We are praised for these inferred motives, which encourage our behaviors and attitudes, or conversely, we are disparaged and criticized, which restrain or prohibit them. In this sense, the vocabulary of motives used by others functions as a factor of social regulation.

The “vocabulary of motive” is learned and internalized by the subject, becoming the terms by which the individual explains their own motives. “The vocabularies which persons choose for their statements of motive tend to be those which are accepted by others” ([12], p. 120). This means that those desires or needs are censored not only by others but also by individuals, depending on whether one can articulate them using socially acceptable vocabularies for motives.

Additionally, vocabularies accepted by others vary across social groups, cultures, and eras. For example, no matter how much a corporate executive emphasizes the religious motives of their business, others may view them as nothing more than a rationalization for profit-seeking. These examples demonstrate that the “vocabulary of motive” used by certain individuals or groups as legitimate can be perceived by others as mere quibbling, concealing other “real motives” ([13], p. 909).

Incidentally, statements of motive do not always occur. It is rare for someone to state their motives, or be asked for them, regarding trivial matters; for example, why they took one road instead of another this morning, or why they put on their pants starting with the right leg instead of the left. According to Mills, “[i]n their appropriate situations, verbalized motives are not typically questioned” ([13], p. 911); conversely, this means motives are questioned in situations deemed inappropriate.

Furthermore, Gerth and Mills note that the vocabulary of motive also varies according to the power imbalance between social groups. “The vocabulary of motives used by privileged groups for the conduct of persons in minority groups is different from the motives used for members of high prestige groups” ([12], 118–119).

3.3. Censorship of Reasons

This happens when the motives behind the actions of disabled people are explained in a non-disabled people-centered society. For example, the act of living alone is described as “highly self-reliant” for non-disabled people, whereas for disabled people (especially those who need assistance in daily life), it is perceived as “selfishness.” Similarly, regarding having children, while it is expected that non-disabled people (especially women) have children as “dutiful” and not having them is seen as “selfish,” when disabled people (especially women) desire or have children, it is often labeled as “selfish.” In these cases, the vocabulary to praise or condemn the subjects is what other people find as motives for their acts.

Yuda had another interesting experience: when she asked her caregiver to put pierced earrings on her, the caregiver asked, “Is that for your health?” For Yuda, wearing the piercing was purely for fashion; she had never heard that piercings improve health; hence, she was taken aback. Meanwhile, the caregiver likely did not think Yuda (or the disabled person) was to wear the piercing purely for fashion; in this way, the caregiver projected the motive (for health) that she conceived as reasonable for disabled people onto Yuda.

What this reveals is that the “vocabulary of motive,” which is generally available to non-disabled people (e.g., comfort, fashion, and beauty), is considered inaccessible to disabled people. Instead, non-disabled people often view acts or desires of disabled people as “unnecessary luxury” or impose the “vocabulary of motive” that they consider available for disabled people (for health reasons). While vocabularies like safety, health, and hygiene are accepted as legitimate for disabled people, using other vocabularies often leads to rejection or surprise (lack of understanding). As Yuda puts it, “it is bothersome.”.

Based on the above discussion, let us consider what asking for reasons actually does. Earlier, we referred to Mills’ point that in adaptive situations, people are typically not asked to verbalize their motives. Asking a disabled person for the reason or motive of their actions or requests signifies that the situation is not adaptive. Fundamentally, when a disabled person undertakes an action, and if the environment is not set up for them to do it independently, some cost must be incurred—for example, investing in equipment or human resources, or dedicating time. Asking why is asking if there is meaning or value in incurring that cost, or if there is a reason that justifies the expense. Implicitly, it may even harbor feelings like, “There is no need to go out of your way to do it,” or “I do not want to pay that cost, so I do not want the disabled person to do it.” In such cases, asking why someone wants to do something effectively expresses the idea that “it is unreasonable for you to do/request this action.” When reasons that would not be demanded from non-disabled individuals are demanded from disabled people, it forces the latter to justify themselves. In extreme cases, even if they provide a reason, they could be countered endlessly, effectively deterring the action.

Indeed, sometimes, the person asking simply wants to know the reason. However, as mentioned in Section 3.1, explaining the reason can feel like “pressure” and “constraint” to the disabled person. This “constraint” from the “pressure to explain the reason” may be the constraint of stepping onto the opponent’s turf—a turf where the opponent can arbitrarily suppress or prohibit the actions of disabled people. Moreover, this state of stepping into that turf is not one they chose. Many disabled people are born into a power dynamic where they are not permitted to act unless they explain their reasons—and unless those reasons are deemed legitimate by others. This dynamic persists from birth within a society centered on able-bodied people, and it is within this context that they become subjects in a Foucauldian sense. As this is the standard state, it takes energy to break free from it.

What is likely to be constrained or dismissed under such pressure is the very “pickiness” we have discussed above. “Pickiness” is a preference like “I just want to do it this way”, lacking clear reasons. Even if a reason exists, it tends to be seen as unreasonable or inappropriate within the context of supporting disabled people, which prioritizes terms like efficiency and safety. Thus, the comfort or sense of at-homeness ought to be experienced by the disabled people receiving assistance, which is frequently ignored.

It is usually the case that disabled people cannot perform actions unless they can persuade non-disabled people. Hence, the possibility of action depends on whether the disabled person has a reason that satisfies the latter (or is perceived as having one). This is, in a sense, a “censorship of reasons”.

4. Fluidity and Stagnation

Whether one is interrogated about reasons, simply asked about them, or feels compelled to explain voluntarily, the intervention of reason censorship inevitably causes the flow of action to stagnate8. The action is interrupted at every turn and thus becomes awkward9. Conversely, the absence of reason censorship, facilitating the pursuit of “the unnecessary” or “pickiness,” leads to smoother actions. The crucial point under discussion here is: for whom is this “fluidity” intended? We are concerned with the fluidity not for able-bodied people or caregivers, but for disabled people.

Here, the English term “pickiness” used to translate the Japanese term “こだわり [kodawari]” carries the meaning of “not going smoothly; getting stuck or jammed” and “stick to something.”10. Although the original primary meaning carries a negative nuance, its meaning has shifted to include positive connotations, as in “コーヒーの味にこだわる [being particular about the taste of coffee].” We could add that “pickiness” may become negative mainly for other people rather than those requesting “picky” actions. Furthermore, whether the “pickiness” is perceived as positive or negative depends on whether the selected action is approved in our society.

While a disabled person feels they are smoothly carrying out their own “picky” actions, the caregiver might not feel the same. They might think, “Why take such a roundabout way?” or “That is inefficient.” In this context, if the disabled person’s “pickiness” is perceived negatively, it is because it is seen as disrupting the fluid flow of assistance from the caregiver’s perspective. The “censorship of reasons” occurs precisely to prevent this disruption to the fluidity of the caregiver or non-disabled people, and implicitly the ableist society. The “pickiness” of disabled people is often dismissed as “wasteful” or “luxurious” elements that disrupt the smooth functioning of the ableist society. However, disabled people’s pursuit of their own “pickiness” through homemaking is precisely what shapes their very identity and creates a sense of comfort for them within their home (and also within their community). What is “unnecessary for sustaining life” is, in fact, necessary for life. For disabled people, their own “pickiness” is not “waste” obstructing the flow of actions. Rather, it is the “censorship of reasons” that seeks to label these as “waste” and eliminate them that actually hinders the smooth actions of disabled people.

For disabled people to live autonomous and free lives, the societal norms—which take for granted the fluidity of non-disabled people and their prioritization—need to be reexamined. Maeda [17], a disability studies researcher who conducted fieldwork while working as an assistant in Japan’s Center for Independent Living (CIL), states that, in assistance in the context of the Independent Living movement, assistants are told to learn how to assist from the disabled person themselves. There, assistants (who are able-bodied) stumble or fail because their own methods do not work. However, “assistance in the context of the Independent Living movement is deliberately ‘designed’ (Ebida, 2020) to not run smoothly” ([17], p. 38). This is so that assistants, through “failure” and “stumbling,” “do not lose the opportunity to relativize ‘efficiency’ and ‘safety.’” Moreover, through “hesitation, stumbling, and confusion,” they become aware of “their ordinary ways of doing things they take for granted.” Maeda states: “In the context of assistance, the goal is that the non-disabled people—who are structurally oppressive to disabled people, and who disregard their agency while prioritizing efficiency and safety—‘become’ individuals who constantly question their own non-disabled embodiment” ([17], p. 38).

The “failures” and “stumbling” Maeda describes serve as opportunities, which disrupt the smooth actions of non-disabled people (the caregiver), prompting them to become aware of their own embodiment and to question it. Likewise, respecting the needs of disabled people and not dismissing them as “waste” can stagnate smooth actions of non-disabled people. For non-disabled people, while feeling perplexed, accompanying the “pickiness” of disabled people without censoring their reasons can become an opportunity to reexamine the “excessive fluidity” of their own actions within an ableist society.

5. Conclusions

This paper has argued that the seemingly simple question “Why?” toward disabled people can operate as a form of reason censorship that regulates and constrains their actions and desires. Through the description of Yuda’s experience, we saw how the pursuit of activities that are deemed “picky” or “unnecessary for sustaining life”—yet are essential for shaping identity and comfort—becomes vulnerable to suppression when the “legitimacy” of such desires is made to depend on providing acceptable reasons for non-disabled people.

In today’s society, as Ishikawa described using the term “disability role,” disabled people are expected to be uncomplaining, passively receive care, and be grateful for it—and this is considered the acceptable norm ([18], p. 118). The “pickinesses” we have discussed have the potential to serve as a counter to the “disability role.” A person who gives detailed instructions to caregivers to realize their own preferences deviates from the norms of “disability role.” They are “inacceptable,” generate “noise” and “trouble,” and cause stagnation. However, this stagnation has the potential to make people aware of the implicit expectations they hold regarding the “disability role” and to serve as a chance for shaking those expectations. Of course, this has certain costs: disabled people who step outside the “disability role” may face condemnation, and in worst cases, their requests may be ignored. Therefore, to demand that only disabled people make the effort to break free from the “disability role” is unfair.

As Matsunami highlights, “The ‘disability role’ is a projection of what able-bodied people wish disabled people to be”[19]. This implicit norm shapes the behavior of able-bodied people toward disabled people. Able-bodied people often ask disabled people “Why?”, either innocently or with a sense of entitlement. However, what one must question is their act of asking itself. Why do I ask questions that have never been posed to me? Why has it been so? These “hesitating” questions may trouble one’s “daily” and “smooth” actions or living, and make one uncomfortable. This very practice of self-questioning is exactly what critical phenomenology necessitates. In other words, the analysis must move from describing Others’ experiences to revealing the tacit assumptions that shape the experiences of dominant subjects. To dwell with this sense of unease is an ethical demand placed upon the majority to unlearn the non-disabled normalcy. It is this very unease that allows us to recognize—and to resist—the conditions that render our “normality” which has been unjustly justified.