Caring for a person may result in emotions for that person. When Helen died, her staff experienced deep sorrow. The authors interviewed the staff, asking to what extent R. Bogdan and S. J. Taylor's (1987) sociology of acceptance could help them understand how accepting ties are made and maintained. Because R. Bogdan and S. J. Taylor mainly looked at relationships within foster families and friendships, the authors broaden the perspectives by examining a case where the relationship was between a resident and her staff in the now-typical Norwegian community-living setting for people with intellectual disabilities. After interviewing staff about how the resident interacted with these other, “typical” people, the authors maintain that acceptance is not only the doings of those without the intellectual disability. The authors acknowledge that a full understanding of accepting relationships requires the perspectives of both parties.
Twenty years ago, Bogdan and Taylor (1987) published the much-cited article entitled “Toward a Sociology of Acceptance: The Other Side of the Study of Deviance,” and they have revisited the subject since. They were looking at “people with mental retardation” and the “typical people” near to them; their endeavor was to examine “accepting relationships” and “the social construction of humanness” (Bogdan & Taylor, 1989, p. 135), which is done by those without the impairment—those without the “deviant” characteristic. Bogdan and Taylor's intent was to move beyond the most current focus of the times; saying that, “[T]he labeling and exclusion of people with disabilities have become so taken-for-granted that instances of acceptance have been glossed over or ignored” (Taylor & Bogdan, 1989, p. 25). The database they relied on derived from their long research careers, though that research had not initially been about acceptance; “we had not been sensitized to look for it” (Bogdan & Taylor, 1987, p. 36). Reexamining their research data, they had come to realize that, “[N]o attribute of a person, no matter how atypical, precludes accepting relations” (p. 35).
A renewed visit to the points these authors made might help us gain an understanding also of relationships between people with intellectual disabilities and the staff who assist them in today's municipal care services. We initially chose this particular lens because, “As a theoretical perspective, the sociology of acceptance is directed towards understanding how those who are different, who might be termed deviant, come to be accepted by other people” (Taylor & Bogdan, 1989, p. 22). In other words, Taylor and Bogdan focused on how the typical person feels and acts toward the person with impairment.
We believe that acceptance is not a one-sided attitude held by the nondisabled partners in relationships; instead, we see relationships as something that is done by all those that participate in them. In this article, we focus attention on how a person with disabilities became close to typical persons in her life. Revisiting the sociology of acceptance, we also contend that staff should be considered in the analysis of the construction and maintenance of accepting relationships.
Outlining a Sociology of Acceptance
Beginning with the article in 1987, Bogdan and Taylor outlined that which they termed sociology of acceptance as an alternative to the prevailing sociology of deviance. The features of this new approach to investigation were based on observations of “person[s] who [have] extremely negatively valued characteristics forming a caring relationship with others who have no such traits (typical persons)” (p. 34). Although this passage acknowledged that forming relationships is a two-way endeavor, the research they reported mostly focused on the motives of typical persons and, later, on the measures that they applied in constructing the humanness of the person with disabilities. The authors were explicit about this; they “seek to understand the perspectives of nondisabled people” (Bogdan & Taylor, 1989, p. 135). By pointing out that the theoretical emphasis at that time on stigma only layed the groundwork for planning what not to do, without any insight on how acceptance might be obtained, they suggested instead that the sociology of acceptance “might produce understandings that would be useful to practitioners” (1987, p. 39).
The typical persons that Bogdan and Taylor referred to were the members of staff. Contingent with criticisms toward institutional care of the times, the authors were skeptical of the possibilities that accepting relationships, as they described them, could emerge with staff in institutional care. “[T]he transitory nature of employees, shift staffing and other organizational factors” (Bogdan & Taylor, 1987, p. 34) get in the way. Although typical persons saw their partners in the relationships as “full-ledged human beings,” staff supposedly held “dehumanizing perspectives” toward such persons (Bogdan & Taylor, 1989, p. 138). Professionals “are not intimately familiar with their clients and therefore are not attuned to the subtleties of their sounds and gestures” (p. 140). Furthermore, because staff may separate their personal life and professional roles, the commitments and bonds that may apply in foster families do not apply to staff. Nor can staff–client relationships be easily defined as friendship, because the contact is a requirement for the paid employee and not voluntary (Taylor & Bogdan, 1989).
Staff do, of course, have a choice. Leidy (2004) pointed out that the main reason staff give for staying with the job, though working conditions may be frustrating, is the relationships they have with those for whom they are paid to aid and provide services. It has also been reported how staff see the well being of their clients as an indicator that they are doing something right (Folkestad, 2004). Bogdan and Taylor also pointed out that,
Sometimes, however, full-time human service workers develop attachments to those they are paid to care for, well beyond the expectations of their jobs. Increasingly some human service workers, specifically many who work in community-based residential programs, are expected to form meaningful ties with their clients, challenging old definitions of human service professionals in terms of “affective neutrality.” In some branches of human services, accepting relationships may be replacing detached objectivity as the norm for practice. (1987, p. 37)
By pointing out that this sometimes is the case, in some branches of services, these authors seem to have seen this as the exception. Twenty years of history and changes toward a more community-based form of organization and services have created a different environment for the meeting between residents and staff. We propose that staff should be considered in ways that were not typical when the sociology of acceptance was initially formulated. Yet, the themes that Bogdan and Taylor's (1987, 1989) analysis provide us with may cast light also on current resident–staff relationships, such as in the case we examine. We turn in the next section to the patterns of motivations and measures that Bogdan and Taylor (1987, 1989; Taylor & Bogdan, 1989) highlighted.
Four orientations toward relationships are categorized from the sentiments and motivations expressed in interviews by the “typical person” toward “the partner with the deviance” (1987, p. 36). These are as follows: (a) family—here differentness is no major issue; rather the focus is on affection, bonds, and obligation (e.g., “He's my brother!”). (b) Religion: The difference is in fact a basis for the relationship. Though we may all be “equal in the eyes of God,” religious motivations for serving the less fortunate lend special significance to those traits that set some apart. (c) Humanitarianism: This way of grounding the relationship is the secular pendant to religious motivations. The idea that the other is a person in need creates a sense of obligation. It is this motivation that might move human service workers into accepting relationships, although the most likely direction is into advocacy, where humanitarian and civil rights are the main issue. (d) Last, friendship: In relationships built on such sentiments, the difference may be unimportant, whereas the positive characteristics and attributes are central; or, the difference may make the other special, more interesting, stimulating, or challenging. Friendship is, in both cases, a voluntary bond grown over time.
Each of these orientations can explain relationships that endure as far as the “typical person” professes to be motivated in one or more of these ways to participate in the relationship. Given the deviance perspective, this begs the question of what is it that makes such relationships viable. Bogdan and Taylor (1989) answered with their analysis of the construction of humanness, which they saw as the partner's who was not disabled way to counter or ignore the otherwise prevailing focuses on deviance.
Means That Are Implemented by the Nondisabled Partner
Attributing thinking to the other
A defining characteristic of humanness is the ability to think. Although people with severe disabilities may have limited ability to produce symbols through movements and sounds, their partners in accepting relationships attribute thinking to them. These partners focus on signals that strangers might not see and emphasize the significance of even faint signals. It is by acknowledging that the other person has something to say that interpretation becomes a meaningful endeavor and communication, then, a real possibility.
Seeing individuality in the other
The descriptions of persons with disabilities often suggest distinct personalities. Likes and dislikes are noted to this effect and are an obvious sign of feelings and motives. Telling the biography of the person creates the explanatory background for behaviors. Managing appearances (e.g., clothes and haircut) to suit age and gender may be a way to downplay categorization as different while accentuating individual identity.
Viewing the other as reciprocating
For there to be a relationship of competent participants, each has to contribute. In accepting relationships, those with severe disabilities are seen to be giving back something important. The progress the person makes because of the interaction in the relationship, even slight progress, may be seen as a reward to the person without disability.
Defining a social space for the other
This is a matter of defining the person as an integral part of a social unit, as “one of us.” By being, for example, a member of the family, one is incorporated in the intertwined rituals of everyday life; he or she also in included in the extended networks of human relations.
A Case of Sorrow: a Norwegian story
Helen had Down syndrome and died when she was 63 years old. She was born deaf and visually impaired, and in her teens she was diagnosed as functionally blind. She did, however, retain some residual sight in one eye. Helen was institutionalized since childhood. During adolescence, she, for reasons we do not know, started using a wheelchair. After moving to another institution where she was given physical therapy and encouragement, Helen eventually regained the ability to walk. In 1993, she was moved to her own apartment in the community as a result of the Norwegian scheme of group homes. This scheme was implemented in the period when the institutions in Norway were being closed, and the municipal level of government was given the responsibility for services and care for people with intellectual disability. Typically, three to five apartments are built in buildings that additionally contain a staff base. The staff base often ties into a common room, which is open to all residents. Sometimes, as in Helen's case, residents have direct indoor access to the common room from their own apartments. The apartments each have two rooms, a kitchenette, and a bathroom. The houses are, for the most part, integrated in residential areas.
Medical problems were a part of Helen's life as she grew older. Through the late 1990s, when Helen was in her 50s, large and small somatic problems interfered with her daily life. Her slightly remaining sight deteriorated progressively; toward the end of her life, she could only distinguish shadows and light. Frequent urinary tract infections, common colds, and even pneumonia caused periods of illness and discomfort. A few years before she died, she underwent successful surgery for cervical cancer. A brain scan revealed changes related to the development of dementia. Still, staff registered that the self-harming behavior that Helen displayed through all her years in institutions became less frequent from the time she moved to her apartment, to the point that she finally ceased the self-harming behavior. In her later years, such behavior was not often the challenge. All in all, staff felt that communication and the relationship between themselves and Helen kept getting better through their time together. Helen's health deteriorated though; she experienced epilepsy; “loose” joints in her hips and knees caused her pain, and she started to use a wheelchair again—first, occasionally, then the last few years for the most part.
Toward the end of the era of institutions in Norway, Helen had been seen by the people who worked with her as challenging, disruptive, and generally troublesome. Consequently, it was the young and new among staff on the ward who mostly would be designated to deal with her. However, “for many people, familiarity breeds acceptance, not contempt” (Taylor & Bogdan, 1989, p. 33). This was very much the case for some of these newcomers, who on most working days were sent to handle Helen's various needs. These individuals eventually sought consultants and new knowledge, becoming innovative in their efforts to create viable contact with Helen. They were the ones who followed her with services into her new home. Their common story, over the 16 to 25 years these actual staff members participated in it, is one of success on many levels.
Staff and the connection they had with Helen mattered a lot in her daily life. Staff's advocating stance helped tap the necessary resources needed to create the stability of a staff she knew well, with trust being a prerequisite for Helen's functioning and a guard against a return to the self-harming behavior she previously exhibited. Helen was entirely dependant on the people who provided her with the necessary help and care each day. The staff who supplied these services to Helen became very attached to her. When she died, their reaction was one of deep sorrow. “Helen meant a lot to us,” they said. “There must have been something,” as one staff member put it, “since I grieve so.” To what extent might the perspectives from the sociology of acceptance help us grasp how the ties between Helen and staff were made and maintained?
The second author (L.F.) worked for a long time as a consultant in an agency with responsibilities for supervision of staff who worked with people who are deaf–blind. In this capacity, the second author was called on by management to oversee services Helen received in her new apartment. Communication became a central issue in the supervision; observation and video provided the examples and themes for the group discussions she led. The second author has left that agency but has since been called on to counsel this particular staff group. When Helen died, she was informed immediately. Reflecting on the ties between Helen and her staff, the second author suggested a round of interviews with members of staff and analysis of these interviews, looking for salient points relevant to establishing and maintaining this kind of relationship between other residents and staff at other locations.
We contacted the ethical board about matters of consent and legal issues pertaining to secrecy and privileged information. On their advice, it was Helen's receiver/guardian who granted the staff members permission to speak freely in interviews. In all other aspects, the ethical standards for social research apply. Each informant was informed about the project and signed a consent form before being interviewed.
As in all such services, staff change over time, and there are those who work on temporary basis (e.g., during vacations and leaves of absence among regular staff). Seven central members of staff—central because of their tenure at the location and their continuous contact with Helen during the latter years of her life—were asked to participate in interviews conducted by the second author, with whom they shared trust and credence. Five of these staff members had known Helen from 3 to 12 years in the institution, and all worked with her during the 13 years when she had her own apartment. Two of them were night staff who mostly knew her ways from late evenings, nights, and early mornings. Five of the interviewees held full-time positions at the group-home location. All of them were women; 1 was a trained teacher, and the others had education/ training (1 year) at the assistant level. The participants were in their mid- to late 40s at the time of interview. Individual interviews ranged from 50 to 104 min, while 2 staff met with the interviewer for a focus-type interview that took 3 hr. “Tell us about Helen,” and, “Tell us about your relationship with Helen,” were our initial requests.
Because of prior knowledge of the relationships and of the developing practices and challenges in everyday life pertaining to caring for Helen, the interviewer could interject questions relevant to themes the interviewees brought to the fore and aid reminiscence of salient incidents. However, this also raised some issues. On the one hand, informants were seen as the privileged knowers who are essential to the creation of stories during the interview (Holstein & Gubrium, 1995). On the other hand, the actual interviewer here had a role in the development of their thinking about practices and challenges in their contacts with Helen. Although this afforded us with valuable insight into their telling, it also may have created biased reflections and interpretations (Folkestad, 2004). We believe, however, that the mutual trust and respect between informants and the interviewer provided the interviews with more candid commentary than would have been the case had a different interviewer played the part.
All interviews were recorded in an electronic medium. Linking tags to the audio files prompted partial transcriptions. In the analysis, we sought emerging themes. The analysis we attempted has to do with interactions and the making and maintenance of relationships. This too raises some problems. First, the interviews were conducted with informants who professed to be grieving the person they were telling stories of. There is of course a danger of biased storytelling due to this particular sentimental circumstance. Second, Helen was not able to tell her own story. Therefore, we were looking at interactions from the point of view only of one party. However, the interviews often described observations and accounts of what Helen and staff did on occasions and in situations. Therefore, we use the material here in an effort to discuss the outlined sociology of acceptance. In the following sections, themes are discussed from that perspective.
A frequently volunteered characteristic of Helen is coined in the phrase, “She was some lady!” This was a salient theme found in the all the interviews; in many ways, Helen, “with those particular impairments she had,” often impressed the staff around her. The staff offered a host of anecdotal evidence and stories to this effect. Bogdan and Taylor stated, “Accepting relationships are not based on a denial of difference, but rather on the absence of impugning the different person's moral character because of the difference” (Bogdan & Taylor, 1987, p. 35). In Helen's case, the staff pointed out the quality of, rather than found fault with, her moral character. “No one person has ever taught me as much,” one staff member said while talking about how Helen overcame obstacles and barriers, “about the importance of every millimeter the way she did in overcoming yet another hurdle.”
Helen's ability to figure out the situations she found herself in and to learn were heavily underlined in many of the staff's stories. For example, while institutionalized, Helen would stand or sit in the corridor. When she became frustrated about something, she sought out particularly hard surfaces to bang her head against. If anyone touched her, she would immediately sit down, becoming “like Jell-o,” and, thus, make it almost impossible for staff to move her. When some members of staff took particular interest in her, they found that, given time on each occasion, she rose to the challenges they presented her: for example, when they arranged a weekend trip. Helen usually was not taken places because she easily displayed disruptive behaviors and made loud noises. At the time, Helen used diapers and would frequently wet herself. En route on this trip, on stopping at a gas station, the staff discovered she had not yet done that. Therefore, using the novelty of a strange place, one of the staff quickly took her by the hand and found a toilet where she sat down. It was reportedly very rare that Helen would accept sitting on a toilet. As the staffer motioned to leave and let Helen get on with her business, Helen grabbed her hand with both of hers. “I realized she didn't want me to leave,” this member of staff said, and quickly added the success story. On reaching the place they were to stay over, they again found Helen to be dry still. So, they quickly made another visit to the toilet. After, they sat her on her bed, and then proceeded to show her the way from there to the toilet, repeating the journey a number of times. In the morning, Helen found her way while the others still were asleep, and then she found her way to the chair next to the bed where the staff person was sleeping and sat there waiting for her to awaken. Their surprise brought forth determination. Back at home, they applied the procedure of showing her the way from her room to the toilet, staying with her each time so she could trust them not to abandon her. This put an end to diapers. They told this story as an example of what they termed “these great big steps that are millimeters at a time.” Seeing the importance of minute victories and tiny progresses is what it is all about, the staff said.
Trust is another main issue the staff kept coming back to; the prerequisite for any change and learning on Helen's part was that she had cause to trust her helpers. Staff understood this to mean that they had to “really be there for her,” in other words, be physically and mentally present. Furthermore, they had to give her time to find her bearings and an understanding of each situation. Presence and patience became their mark. Slowly, Helen let them closer. The evolution from her initial refusal to be physically touched to her initiating a cuddle is told and retold in the interviews; this had also been documented in the videos and observations that were used as vantage points for the counseling sessions earlier. The stories staff told during the interviews were about Helen's life, about her intentionality, learning and rising to the challenges—all this on the millimeter level. In the following section, we take a closer look at some of these stories through the lens described by Bogdan and Taylor (1989) as “the construction of humanness.”
Attributing Thinking to Helen
“She understood so much!” staff said, “so quick at accepting signs.” Staff had learned how to connect indexical meaning to gestures Helen already made in certain situations to create signs. She tapped her plate, and they provided second helpings, making the frustrated or annoyed tap into a meaningful request. The speed with which Helen caught on to their systematizing of signs was seen as indicative of her ability to think and to grasp. When she used the switch they provided her with to start and stop music that she could experience through a resonance set up, they said, “She understood the connection between the switch and the music.” At other times, Helen showed initiatives that staff connected to her ability to think. An example is the incident of Helen being given her winter coat, a signal for a walk. She went and put on shoes and returned carrying her winter boots also. She knew, the staff said, that the weather called for warm attire, but she disliked boots that robbed her of tactile sensations of what she was walking on and, hence, where she was. “She knew what she was supposed to wear, but she didn't want to.” Certainly, Helen's actions spoke of her cognition. The task for staff in this situation was, first, to interpret her intentions and, second, to choose how to react to her actual choice of shoes. Therefore, this was not simply a case of one-sided attribution of thinking. Helen's initiative had a formative impact and created the necessity of interpretation by staff. What they accordingly had to interpret dealt more complexly with her actions and intent.
Seeing Her Individuality
What clothes to wear was the topic of many anecdotes. Most mornings, Helen would rifle through her wardrobe, discarding many items until she settled for something and put that on. Staff saw this as choosing; they registered that certain clothes seemed to be favorites of hers in that they were chosen often. The explanations the staff gave for her proclivity to change her clothes many times a day revolve around favorites; when a favorite item was being washed or otherwise not readily found, Helen, they say, would settle for something else and then tire of it or find it not to her continued liking. Then, she would simply change again. As one story goes, Helen was taken shopping. She found her way in the store to a rack of skirts, sat down on the floor and proceeded to feel each material. Finding one she liked, she pulled it down off the rack. The staff bought the piece for her. The given proof of her liking and choosing this particular skirt was that she did not change it once she chose to put it on in the morning. These observations of how Helen acted in situations emphasized how particular she was about what she was wearing, suggesting taste or choice at least. Another sign read as individuality and personality was her appreciation of good company, which is discussed in the next section.
Seeing Her as Reciprocating
“Company was not a little matter to her”: Helen's 60th birthday party was a much-cited example. “She knew that people were there, though she couldn't see them, she knew they were there for her.” The staff described her facial expression and demeanor at this particular event. When people were physically near enough, she would in general seek them out with her hands. Finding them, she would often lean her head toward them. Meal times were situations often retold as brimming with communicative contact. “She was so sociable,” and “She talked so much,” are remarks to that effect. When the setting was made up of more than a dyad, the staff said she was good at engaging all in the “talking,” which consisted of sounds and touches. At some point, staff had each chosen a unique bracelet as a sign of who was who, and they used these bracelets in introducing themselves to Helen. There was an understanding that Helen knew with whom she was interacting and that she differentiated according to whom she trusted more. A story was told of a time when Helen was ill during the holidays and her most regular staff were scarce. Those that dealt with her became worried because of her silence and unwillingness to eat or drink. After a trusted staff member presented herself to Helen, Helen started making first “complaining” sounds and then “consoling” ones. This was read as a clear message that she was feeling unwell and glad to have a trusted person near. Regardless of the factual message, her willingness to speak up to the well-known staffer was evident and contrasted with her silence toward those who were less well known.
Defining a Social Space for Her
After Helen died, staff members would sometimes open the door from the staff base into her apartment; they missed her and found it strange that her quarters, in a way, became sealed off. Some wandered into her soon emptied apartment and had a moment of remembrance.
Helen's many needs had been the basis of successful argument for resources. “I really hadn't thought about it like that before,” one staff member said, while pointing out that allocation of working duties had changed since Helen died. Some staff left to take other jobs in the municipal care system; others reported ambivalence toward staying on. “Sally [staff], Helen and I have been very good friends,” a staffer remarked in a moved voice. Another put it this way, “I became fond of her, and I think she was a little fond of me too.” It clearly was not all about job security.
When Helen's staff was set to clear out her apartment of the things her relatives did not want, they sometimes suggested that someone should take a certain memento. Sally remarked, “But many of the things that Helen had, I already have. We almost always went to the same sales, you see,” thus indicating the interwoven nature of Helen's life to hers. Helen was known to the families of her intimate staff too. She died when summer vacations had started. On receiving news of her death, one family decided to return early from their extended trip to get back in time for her funeral. Other staff members tell of their children's remembrances of Helen.
“We are all richer for having met her,” some said, “She gave us so much.” What exactly that meant was difficult for them to define. “She taught us quite a bit about what it takes to make communication work,” one said. Many spoke of the privilege of trust she bestowed on them; they would tell in detail episodes from everyday life, visits to the pool, or other places to relate to us how this trust was made evident. They spoke of her sense of humor and backed the notions with stories they could tell.
Swartz (1988) criticized the first outline of the sociology of acceptance, saying that the presentation was more suggestive that confirmatory. He took issue with the way the authors used the term acceptance. On the one hand, they referred to the example of Martha's Vineyard, making acceptance mean “just like everybody else.” On the other hand, they still called it acceptance when the person in question was seen as “special, more interesting, more stimulating, more challenging, more appreciative” (Bogdan & Taylor, 1987, p. 38, as cited by Schwartz, 1988, p. 36). Schwartz proposed rather that having acceptance define relationships between people with and without disability, where both are viewed as equals. Where the disabled person is given a favored status, Schwartz would use the label advocacy. Taub and Greer (1998) reiterated Schwartz' critique and suggested that what was described by Bogdan and Taylor were “interactions reflecting benevolence and tenderness rather that equality and esteem” (p. 296). These authors also held the view that any special favors granted in social interactions to an individual because of an otherwise discrediting attribute reflect stigmatization rather than acceptance as an equal. Rather than categorizing accepting and stigmatizing interactions as a matter of “either/or,” they would see them as polarities of a useful continuum for examining situations on the basis of their salience and relevance of the disability to the situation.
Acceptance, Benevolence, or Advocating?
Bogdan and Taylor's (1989) stated that, “What and who others, as well as we, are depends upon our relationships with them and what we choose to make of us” (p. 146). We believe this to be true, as long as we means all of us and is not limited to one party in the relationship. Helen's background was an institutionalized life. Her impairments were a challenge to those who interacted with her. If we were to exclude the relationships she had with the staff close to her because they were paid to help her, that would be to devalue the essential importance these people had in how she could live her life, among other things, and how she could have mutual contact with other human beings. The staff reported how they were all the richer for having known her. Very likely this holds true from Helen's perspective also. Her ability to differentiate among them was shown by her willingness to speak up when trusted staff presented themselves and could have indicated an understanding of reciprocal relationship. Asymmetry in the relationships was of course evident. Helen's ability to communicate was not obvious to those who did not know her; it required knowledgeable coactors. Consequently, Helen had acute social dependence. Discussing the situation of their son, Ferguson and Ferguson (2001) pointed to the webs of significance woven by significant others in his life that counter “the scary stereotypes and diagnostic categories” (p. 71) that could easily have swallowed up his individuality. It is these others who create inclusion in ordinary life. In Helen's case, we argue that acceptance was not brought about as a kind of construction of her humanness done by the staff; rather, her humanness was taken for granted and a point of departure for their advocacy in dealing with service management and for the benevolence in endeavors to communicate with her.
Believing that Helen was able to initiate and participate in communication was the basis for staff to do the same in contacts with her. This is the starting point for any communications. In Helen's case, extra knowledge on the part of staff was evidently necessary to grasp her signs, but the interaction dealt with basically the same problematic and used the same kind of expertise we all use in everyday communications. Listening is the first step to hearing; that is, to say that staff acknowledged that there was meaning in what Helen was saying through the use of sounds, signals, movement, and general body language. Background expectancies, as Garfinkel (as cited in Heritage, 1984) pointed out about all communication, are necessary backdrops for any understanding. Helen and her staff's common story is much of what constituted this backdrop. Staff had experienced Helen's ability to learn and to grasp. For staff, or any observer, it is the process of taking turns in the continuing interaction that suggests communicative intent on both sides. Both parties are acting, and it is this doing that makes relationships; they are not the fruit of attitudes held only by some.
In the sociology of acceptance, Bogdan and Taylor (1987) questioned the inevitability of stigma, stereotyping, and rejection of people who were seen to have deviant characteristics, as they were defined through the concept of sociology of deviance. New understandings of disability have since arisen; less essentialist and more interactional concepts now influence this field of research. The language of the sociology of acceptance was written in relief against stigmatization and the “impugning [of] the different person's moral character because of the variation” (Bogdan & Taylor, 1987, p. 35). Is this still the typical tendency in society in postinstitutional Scandinavia? There are grounds to question such an assumption. Should a specific construction of humanness be necessary, then, that is to say this trait otherwise is missing in the other. We acknowledge that impairments like those Helen experienced make other people's initiatives toward her a quintessential element in any contacts. Scarcity of such contacts may be ascribed to other people's uncertainty about how to participate in communication with her rather than to rejection resulting from negative attitudes toward a person who is disabled. Söder (1990) pointed out that people do not generally hold negative attitudes toward people with impairments, although they do hold negative attitudes toward, and even fear of, impairment. Ambivalence is a better description of most people's vantage point. The lack of contacts and interaction, then, are not necessarily based on malevolence.
Our case was researched after Helen's death; we did not have her input to our investigation. We strongly agree with Bogdan and Taylor (1987) that it would be worth investigating how accepting relationships are brought about and maintained. The one-sided focus of the sociology of acceptance as it was initially outlined and argued does not provide a full understanding of accepting relationships. It is no longer surprising that people with intellectual disabilities are seen as human beings. The changes in service structure and the visibility brought about by the closure of institutions have helped in this regard. People with intellectual disabilities have more chance to show themselves as agents and to exercise voice. We agree that future research into the makings and maintaining relationships of the kind we have discussed, here based solely on retrospective interviews with staff,
Should integrate perceptions from both the able-bodied and the individuals with disabilities and consider the circumstances in which the interaction occurs. Such study would facilitate insight into the process whereby acceptance is negotiated as well as help explain divergent interpretations regarding the extent of acceptance between typical and atypical persons. (Taub & Greer, 1998, p. 300).
We thank the members of Gysinge Seminaret, Department of Sociology, Uppsala University, Sweden, for their comments and questions on an earlier draft of the manuscript. We also thank Professor Mårten Söder for continued mentoring, and the editor and reviewers of IDD for their constructive comments and recommendations.
Authors: Helge Folkestad, DrPolit (firstname.lastname@example.org), Associate Professor, and Lone Folkestad, Cand. Mag, Assistant Lecturer, Bergen University College, Institute of Social Education and Social Work, Haugeveien 28, Bergen, 5005 Norway