This study reports on a subset of data obtained from a larger study. A qualitative study of persons with disabilities was conducted to examine the phenomenon of collaboration with others in their lives. Participants were administered two semi-structured in-person interviews about their experiences with collaboration. Each of the participants were then observed as they collaborated with others in their lives in two participant observation sessions. Since not all participants were married, selected data relevant to the marriage collaboration from interviews and participant observation sessions of a subgroup of four married study participants were then isolated and coded using open coding analysis. Accuracy of data was insured through the use of triangulation via multiple coders and member checking. The analyzed data fell into five large categories: 1) Practical Considerations; 2) Collaboration on Occupation; 3) Structures and Patterns of Collaboration; 4) Social Considerations; and 5) The Qualities that Make the Marriage Collaboration Exceptional. Data indicated that study participants collaborated with their spouses in a variety of ways over time and that there were qualities in their collaborations with their spouses which indicated a high level of mutual respect and love. Some unique issues in the marriage collaboration for people with disabilities also emerged, such as feelings of imbalance in the contributions to the marriage regarding physical tasks, a need for alone time or — conversely — a fear of being alone.
Keywords: collaboration, marriage, disability
Introduction
This study explored themes of collaboration in the marriage relationship among persons with disabilities. The types of collaborations in such marriages can help practitioners understand how disability can affect interactions between spouses and how spouses might gauge their collaborations with spouses because of disabilities that they, their spouse or both of them may have. It also appears that certain kinds of collaborations and themes emerged in the marriage relationship for persons with disabilities which were indicative of a high degree of mutual respect and love. For purposes of this study, collaboration was simply defined as "working together to achieve a common goal", and collaboration in any and all aspects of life with spouses (with or without a disability) was explored.
Literature Review
The literature revealed some examples of interdependence as a form of collaboration in the marriage relationship. There is a growing interdependence that develops between spouses during the aging process (Clark & Anderson 1967; Depner & Ingersoll-Dayton, 1985). Scheer and Luborsky (1991) tell the story of a disabled elderly woman who "lost… a valuable disability ally who helped her maintain physical comfort and functional capacity" upon the death of her husband (p. 1176). Oelschlaeger and Damico studied how a man with aphasia used repetition as a form of collaboration in conversation with his wife to compensate (1998b). They also studied a man with aphasia and his wife in the use of joint production in conversation, wherein one member of the conversation starts to speak and then their turn is completed by another person (Oelschlaeger & Damico,1998a).
A recent area of research by a few scholars has been in the area of collaborative cognition among the elderly, which "refers to processes and outcomes that occur when two or more individuals engage jointly in activities such as problem solving or memory" (Strough, Patrick, Swenson, Cheng & Barnes, 2003, p. 44). Most studies on collaborative cognition involve married couples (Strough, et al., 2003). One such study by Berg, Johnson, Meegan and Strough (2003) determined that married couples use a variety of approaches to and patterns in their collaboration in their daily lives, including the division and delegation of tasks.
Parker (1993b) discusses the problems and changing dynamics relative to the independence of both spouses, power differences and balance of exchange within the relationship, self-care, financial management, effect on children and assistance from immediate and extended family as well as outside resources when one spouse in the marriage becomes disabled. For example, after the onset of disability for the husband, "in all cases where male spouses had taken substantially increased control over household finances carers tended to explain their acceptance of this in terms of giving the spouse something to do." (p. 80). Parker (1993b) also mentions spouses' need for time away from each other. Finally, referring to Duck (1983), Parker (1993b) suggests that "when the fairness of equity of a relationship feels out of balance… one or both partners will re-examine the relationship and make attempts to redress the balance." (Parker, 1993b, pp. 89-90). Frank (2000) discusses some of the dynamics in the relationship between a woman with congenital limb deficiency and her boyfriend who later became her husband and from whom she was later divorced. Garee and Cheever (1992) provide numerous vignettes of married couples wherein one or both members of the couple has a disability and the various coping strategies they use to get through their day, including use of technology, planning of the home environment, focusing on strengths, having realistic expectations of what each other can do and doing what they can, sense of humor, creating their own roles, finding time for oneself, work, awareness of self-care issues, and a strong bond of love.
There was a minimal amount of literature on the topic of collaboration in marriage, especially for people with disabilities. This would indicate that further research on this topic is needed and this study represents a step in that direction.
Design and Method
This study employed a phenomenological, qualitative design. Phenomenology is often used in qualitative research as it provides an insider view on the particular experience being examined (Creswell, 1998; Denzin & Lincoln, 1994; Patton, 2002). The purpose of this study was to reveal perspectives and experiences of people with disabilities regarding their collaboration with their spouses.
Participants
The study presented in this article was a subset of a larger study on collaboration by persons with disabilities which had five original participants. For the study discussed here, the data from the fifth participant was not included because he was not married. Therefore, the participants in this study were a convenience sample consisting of two men and two women. Three individuals were suggested to the author by a colleague to be participants in the study. This colleague acted as a gatekeeper by initially contacting the participants about the study and obtaining permission from them for the author to contact them about study participation. One of these study participants suggested the fourth study participant, who was then approached by the author about study participation; therefore a "word of mouth" or form of "snowball" sampling was used to recruit the fourth participant. In snowball sampling, new and possible participants are obtained from asking other participants (Patton, 2002, p. 194).
The age range of participants was from 49 to 52 years. All of the participants had a physical disability; two of the participants had quadriplegia, one had paraplegia, and one had cerebral palsy. Three of the four of the participants were married to someone who also had a disability. All of the participants were working and living in the community. One of the participants had received a high school education and three of the participants had advanced degrees. All of the participants were currently married and were of a middle or upper socioeconomic class. In order to protect confidentiality in the reporting of participant data, the names of the participants for this study have been replaced with pseudonyms (please refer to Table 1 for pseudonyms and specific demographic information for each participant). This study was approved by the Human Subjects Review Committee of the Institutional Review Board of Texas Woman's University, Houston, TX.
Data Collection
Data were collected via two methods. The first method was through two audiotaped, in-depth, semi-structured interviews that explored participants' experiences with collaboration and the significance of collaboration for them. In the first set of interviews, participants were asked open-ended questions about their past experiences with collaboration; in the second set of interviews participants were asked about their current experiences with collaboration. Each participant was interviewed by the researcher on two separate occasions about two weeks apart for one to two hours each time. Participants were interviewed either in their homes or in a quiet and private area of a work environment. For this study, there was a total of eight interviews.
The second method of data collection was through participant observation. The term "participant observation" refers to researchers making field observations of a social environment by being around or in that environment in order to analyze it qualitatively (Lofland, 1971, p. 93; Patton, 2002, p. 262). In this study, participants were observed as they collaborated with people in their lives throughout the day — with family members, co-workers, strangers or friends. Participant observations for each participant occurred on two separate occasions about two weeks apart for one to two hours each time. Participants were observed in their homes, at work, at church or while on a family outing.
Data from a total of ten participant observation sessions were used for this study. Six of the participant observation sessions directly involved the participants. For the remaining four participant observation sessions a participant's spouse either contacted them by telephone, fax or e-mail during the observation or the participant spoke about their spouse to others in their environment, and data were excerpted from those parts of the sessions. Data were collected in the form of field notes and noting conversations between participants as accurately as possible.
In addition to the four participants who were interviewed and observed, anyone who was also observed along with them also signed a consent form. In every case, the author was the sole interviewer and observer. In order to protect confidentiality on the reporting of data, pseudonyms are used for the spouses of participants when they are mentioned in this article.
Data Analysis
Data from audiotaped interviews and participant observations were transcribed and typed. Then, using a method known as open coding, the author coded data from all of the interviews for the concept of collaboration. Following an approach similar to one outlined by Creswell (1998), statements and themes related to collaboration in the interviews were identified for each participant's interviews and coded according to their properties, until all instances of collaboration in each interview were identified by one or more properties and no new properties about collaboration could be determined. When possible, if properties could be seen as subsets of a broader category, they were condensed into broader categories for each participant; if a property could not be condensed under another category, it became a category. The researcher then made a list of the categories of collaboration for each participant, noting when categories appeared to be overlapping, related, or contained aspects of each other.
Excerpts from the original interviews which were relevant to the marriage collaboration were isolated by the author and submitted to a total of three other coders to be coded with open coding analysis relative to the marriage collaboration. Therefore, each piece of data relevant to the marriage collaboration from a total of eight interviews was subjected to open coding by two separate coders including the researcher.
Six participant observations and excerpted data from four additional participant observations relevant to the marriage collaboration were then coded by the researcher and the same other three coders using open coding analysis for the marriage collaboration. Therefore, each piece of data relevant to the marriage collaboration from the participant observations from a total of ten participant observations was subjected to open coding by two separate coders, one of whom was the researcher.
Verification of Data
As described above, selections relative to the marriage collaboration from a total of ten participant observations and eight interviews were individually coded using the open coding method by a total of three other coders in addition to the author, so that each selection was coded by the author and one other coder (with the exception wherein one small set of selected data was coded by the author and all three coders to help determine if there was consistency across coders). Then, working together, the author and one of the coders combined the codes generated by the author and the individual coders from the interview and participant observation data into broader categories. Finally, the author and coder collapsed these broader categories. Most of these categories were further conceptualized into five main groups of data. A follow-up validation of codes and categories involved a second, outside coder in the coding and in the multi-step categorization processes.
Member checking was also used to assist in the validation of the interview data . In the case of this study, of the four participants, two were involved in the member checking process. One reviewed, corrected and made comments on all of his interview transcripts, all of the properties the researcher had determined via coding them, and all of the categories generated from the properties from the researcher's coding of his interviews; and another participant reviewed, corrected and made comments on all of her original transcripts and properties from the coding by the researcher. Finally, the data also have credibility because the researcher was able to enter the world of the participants, and participants allowed that entry.
Findings
Twenty one major categories relevant to the marriage collaboration by persons with disabilities were generated from the data. Within these 21 categories there might have been anywhere from 1 to 17 codes. Of those original 21 categories and their codes, some were eliminated because of redundancy and/or insignificance, or because they were unrelated to the core issue of the marriage collaboration or because data was insufficient to support them.
Five themes relevant to the marriage collaboration by persons with disabilities emerged from the data, and include: 1) Practical Considerations; 2) Collaboration on Occupation; 3) Structures and Patterns of Collaboration; 4) Social Considerations; and 5) The Qualities that Make the Marriage Collaboration Exceptional. Please refer to Table 2 for a graphic display of the categories and subcategories.
1. Practical Considerations
Most of the themes in this category represent an approach to daily tasks which are representative of joint cognitive efforts between the spouses.
1a. Division of Tasks and Roles According to Abilities
One major theme which emerged from the data was division of tasks and roles between the spouses according to abilities. Tasks and roles were divided up between the two members of a couple. Sometimes this division of tasks or roles was based on the interest of the individuals but often it was done according to how each of them was equipped (usually physically) to handle the task. For example, Janice (who had paraplegia) drove the van that she and her husband used for transportation while her husband (who had quadriplegia) purchased it. In some cases the roles evolved based on the skills and the abilities of the parties; in other cases the division of labor was discussed and decided on early in the marriage.
In the case of Guy (who had cerebral palsy) and his wife (who did not have a disability), Guy managed their finances on the computer via adapative equipment which he referred to as a "headfinger" which was a headstick that he wore attached to a band around his head allowing him to press the keys on the keyboard. He described the division of tasks in this manner:
The way it works around here is I do everything I can do on the computer because there's a lot of physical things that I can't help with. But even though I might do things on the computer like our finances we collaborate together to decide how that should be handled.
Guy's wife did most of the other physical tasks necessary in the marriage and was usually the one who talked with repairmen as needed because her husband's dysarthria made it difficult for him to communicate. In turn, Guy provided emotional support to his wife, particularly while she was speaking with repairmen, by being with her and helping to talk her through it.
It should be noted that Guy made a distinction between what he referred to as tangibles and intangibles in his marriage:
We both like to travel but my wife has to handle a lot of the tangibles. However, we both decide what we want to do, and how to do it. And because it's my job to do the finances, I do most of the deciding if we can afford to travel or not.
Guy felt that there was an imbalance in the amount of physical tasks his wife had to do in the marriage as compared to how many he had to do. He said:
I think she has to do more things than I have to…. there's an imbalance in the tangible things. But I think I do a very good job with the intangibles…. I usually help out emotionally whenever I can.
Karen and her husband decided early on in their marriage about certain roles they would have. Karen (who had quadriplegia) was to be the breadwinner and work out of the home while her husband (who also had quadriplegia, but a less severe form) would stay home and handle the finances for the couple on the computer. Another area in which a division of labor was evident was in her description of their collaboration while going to the grocery store:
For example, when we go grocery shopping. Walter does the driving… he gets us to the store, and goes to the store with me and maybe picks things off the shelf. But usually the decision about what we are going to buy it's probably mostly mine. Except maybe when we get to the meat counter because he likes steaks, so he goes up to the meat counter and tells the butcher what steaks he wants to buy so I kind of let him do his thing there. But I think… for the most part, the meal planning part is mine. And then when we go to the store we talk about oh, you know, do you want to have this this week or do you want to have that, and so we certainly jointly decide what we're going to have. But in terms of what ingredients to buy he leaves that up to me, and then of course when we get to the check out counter he pays… the bill. And so that's kind of our typical arrangement there.
Janice also reported that she and her husband often collaborated using lead roles. For example, he would research features and prices of items they wanted to buy, bring the information back to her, and they would decide together what to purchase. He chose this lead role due to his interest in shopping and bargaining.
These are examples of where tasks and roles were mostly divided between the two members of the couple according to physical ability (driving, taking down items from the shelf, paying the bills) and/or according to knowledge, skill or interest (delineating what ingredients are needed, choosing meats).
1b. Collaboration About the Environment
Some notable areas in which participants collaborated were the areas of decision making and planning about and management of their household environment. Some participants collaborated with their spouses on the adaptation of their home environments in order to make it accessible. Another area in which they collaborated were attendant arrangements. For example, during one participant observation session, Guy and his wife collaborated on printing out a flyer to post advertising a job as a part-time caregiver for Guy. Karen discussed at length her collaboration with her husband on the purchase and remodeling of their home:
When we bought our house.… we certainly both had ideas of what… kind of house would work for us… and… we would talk about… what kind of kitchen it had to be, could there be a big center island or not, would hallways work, or… are they too hard to maneuver… if we looked at a hall that had a lot of carpet that might be a little difficult because it's so hard to roll off…. And we worked together on remodeling, trying to decide what colors did we want in the bathroom… even though we knew we had to have a roll-in shower, there were still decisions to be made like how big it should be… did we want to knock out any walls and make the bathroom bigger, or just try to make it as small as possible to get by. We had to look at the height of the sink, and that was his decision because he's the one that rolls under it, so, some of the decisions about how the house got remodeled had to do with who had to use the particular item that was getting remodeled.
1c. Problem Solving
Another area of collaboration by people with disabilities in their marriages which emerged in these data was in the area of problem-solving. The couples often worked on solving problems together which came up during the course of the day. Most situations had to do with working together on figuring out how to accomplish a certain task considering the disabilities of the individuals involved; some had to do with determining while on the road why a particular piece of adaptive equipment was not working and how to fix it temporarily until they could get home and get it properly repaired. Some had to do with simple navigation on and off of a ramp to a van. One example occurred in a participant observation session with Guy and his wife in which they demonstrated a long-standing routine between them as Guy transferred from his wheelchair after it was in the van into a seat in the van. In this routine, Guy's wife put his hand in a strap (actually a dog leash) which they had affixed to the ceiling of the van. Both of them waited for Guy to position his right hand over his left hand and to get his feet into the right position. Guy then signaled when he was ready by saying "OK" and then his wife grabbed him while he pivoted and landed on the seat.
Another example of problem solving occurred during a participant observation of Karen and her husband as they were leaving to go to a meeting. Karen asked her husband to get her wallet and asked me to carry her water. Her husband started and opened the van with a remote. He then backed his wheelchair into the van. Karen backed in off track and her husband told her how to realign. Then he put her seat belt on her. She and her husband then talked to me about van repair problems. Karen asked me to give her water to her husband so she could sip it. He then held the water for her and put it down when ready.
1d. The Use of Technology
Another area in which people with disabilities collaborate with their spouses is in the use of technology. They often used various forms of technology to facilitate collaboration and communication with each other throughout their day. These forms of technology included but were not limited to the telephone (cell phone; hands free phone with a headset while driving with hand controls; speaker phone; and fax), the computer (e-mail; fax; "Easy Access" program in order to be independent with use of computer; using the computer and a headstick to do financial management), and driving vans which were equipped with automatic starters, automatic door openers, hand controls, or easy lock devices to lock down wheelchairs. Sometimes "low-tech" items were used; for example, Guy and his spouse came up with the creative idea of using a dog leash which they hung from the ceiling of their van as a strap for him to hook his arm into to provide stability and control while transferring. One excellent example is in the case of Michael who called his wife on his cell phone from his bedroom down the hall to talk to her about what he wanted to eat for dinner. This approach was far more convenient, efficient and timely than asking his attendant to transfer him out of bed into his chair and wheel down the hall to talk to her.
2. Collaboration on Occupation
2a. Work
In the area of work, participants were seen to support each other in their desires for careers, work outside the home, work inside the home, work tasks, and work interests in general. In some cases, one spouse supported another in the writing of a resume or calculating figures for work. One of the participants, Janice, was self-employed outside of the home. Her husband was supportive of her interests in that regard in addition to his work outside the home. Karen discussed the decisions she and her husband made together early in their marriage about their work roles:
Well… since we've been married our roles have been, and this was kind of an agreement that we came to when we first got married is that my role would be… I would continue to work at my job as… an attorney, that I would… go to work during the day and he would be at home, and he works all day on the computer, that's what he's done for many, many years and so his job is… more the financial planning, doing our budget on the computer, entering checks, looking at… maybe loans, mortgages, how many years it's gonna take to pay that off… just kind of general financial matters… and he would handle all of that. He also takes care of all of our mail, paying all of our bills, and my role is the person who leaves the home and goes out and… does my thing.… and so this was an agreement but… I think that… we have worked together to make the decision that these would be our respective roles.
2b. Self-Care
These types of collaborations with spouses occurred during participant observation sessions and centered mostly around eating. A good illustration of a self-care collaboration occurred between Guy and his wife during a participant observation session while they were attending a meal at their church. In this example, Guy's wife put her purse on his wheelchair and wheeled him in to the dining room. She put a napkin in his pocket. Then she went over to the food buffet carrying two plates (one for each of them). She asked him if he wanted jello. Guy followed her, telling her what he wanted while she filled the plates. She didn't always hear him correctly. He told me he knew she was going to get him water. They pulled up to the table and he asked her to lock his brakes. She fed him while talking to a friend. He listened and waited to eat, leaning in toward her and sitting sideways to the table so as not to get food all over. She wiped his mouth during and after eating. Then she took him to the rest room, holding the door for him and pushing his wheelchair. Guy stated he was hot, so his wife took off his tie, unbuttoned his shirt and took off his jacket.
3. Structures and Patterns of Collaboration
Some typical and recognizable patterns in the marriage collaboration by people with disabilities emerged from the data. The theme of role division discussed above was a strong pattern, but there were other patterns that became evident. These had to do with stating one's needs, requesting assistance with a physical task, or anticipating needs of one's spouse.
One example of requesting assistance with a physical task occurred in a participant observation session in which Michael (a man with quadriplegia) and his wife (who had paraplegia) were at home and both working at their computers. Michael asked his wife to do some paperwork and add up some numbers for him. She asked if she had to come over to get the paperwork and numbers. He explained to her how to add them up and make a running tab for him on the data. Michael's wife typed up and printed out an accounting of the airplane ticket coupons he asked her to add up. She went over to him and gave him a printout of the total. He acknowledged it while talking to people on the phone.
Some examples in which Michael stated his needs and/or his wife responded to or anticipated his needs by completing a physical task occurred during two separate participant observation sessions while eating out at a restaurant. For example, in these sessions. Michael's wife anticipated his needs by paying for the food, putting lemon in his tea, cutting his food, feeding him bread, toast or a pickle, and pouring capers on his food. Michael stated his needs and requested assistance in asking for butter for bread, asking for tea and for her to stir it, asking for lemon, asking for salt, and asking his wife to bring the plate over closer to him. She responded to his requests.
There was a temporal quality to some of the collaborations in which the spouses engaged. Some of them had invested hours planning about their home environment together. Participants had been married a long time and their collaboration was therefore a long-term one. According to Guy, "I do have a job description now in our marriage. But it's because we have figured out what I'm best at." They had learned and realized over time how to work things out best in their collaboration.
4. Social Considerations
4a. Helping
Spouses assisted each other. Karen's husband assisted her in safely navigating up the ramp to their van and buckled her seat belt. In a more extreme example, Karen reported how her husband had assisted her in an emergency situation with her ventilator by calling 911. Guy's wife stood in a crouched position while holding the hymnal for him in church so he could see it. She also assisted him in communication by acting as an interpreter for others who had difficulty understanding him. Guy and his wife compensated for each other's deficits. When she talked to repairmen he supported her emotionally through the process. At times Guy would carry his wife's purse in his wheelchair while she pushed it. Other times he would assist her by wheeling his chair himself which, because of his spasticity, would often mean wheeling backwards while watching over his shoulder. At times an exchange of services could be observed between them during participant observations. For example, Guy brought up and printed out on the computer a flyer advertising for a caregiver for him while his wife explained to me what the job was about.
4b. Making a Contribution
This theme was seen primarily in the relationship between Guy and his wife. Guy had a desire to be as independent in areas such as donning the headfinger, and his wife allowed him to do that. Guy and his wife used their skills for the benefit of both parties. For example, one spouse was good at budgeting, the other used technology in the form of the computer to compensate for his physical deficits to manage the finances. His wife did not have dysarthria so she was the one who usually spoke to repairmen. A quote from Guy sums the situation up well:
We realize that one of us may be better equipped to handle some things than the other and vice versa. And we're comfortable contributing what we can…. I don't know if I would call it fair. But I think we each do what we can to contribute to the marriage.
4c. Alone Time
The researcher included a question regarding alone time in the interviews to determine participants' perspective on situations in which they were collaborating with others. Generally speaking, the more severe the disability a participant had, the less alone time they had because of the amount of care or assistance they needed. Michael spoke about the subsequent loss of privacy that comes with disability. Michael did not enjoy alone time because he was concerned for his safety when alone. Karen (who had the most severe disability), in particular, enjoyed alone time because she really could only get it at the end of the day when she could be alone with her "own thoughts". Janice and Guy responded that they enjoyed alone time because they were in control of what they were doing and when they were doing it. As Janice put it,
My husband travels and that's one of the reasons I married him, 'cause I knew I could have some alone time…. I really enjoy just the peace and quiet, and… the ability to… not do anything, not to have any demands… I mean I don't want it for a very long time, but it's nice to have the break and I enjoy it."
4d. Allowing/Freedom
The themes of Allowing and Freedom were closely related to each other. Participants were aware of each others' strengths and interests so they allowed each other to make the decisions and follow through on those interests. For example, Karen allowed her husband to choose the meats he wanted for dinner at the meat counter. She also allowed him to be the one to choose certain items they were going to remodel in their home because those items were the ones that pertained to him (such as a sink with wheelchair access). Participants also allowed their spouses to pursue their own work interests outside of the home. These allowances indicated a sense of respect and individual freedom within the relationship.
The themes of Allowing and Freedom were also closely related to the theme of Alone Time discussed above. Participants allowed their spouses to pursue their own interests. This was often evident in participant observation sessions in the homes of participants. Often, Michael and his wife would be working in each other's vicinity but on separate projects on their own computers, such as hobbies on the internet or work from home. Some spouses allowed each other the space and freedom to socialize with others at church. For Guy, Allowing and Freedom were closely related to Alone Time and were indicative of a high level of trust in the marriage. Guy said,
Right now my wife plays piano in a couple of different groups here. So she'll practice once or twice a week. She'll also go out dancing at least once a week and this will give me the alone time that I enjoy. Because I can either read or… I can watch T.V. by myself. I also stay up a lot later than my wife most of the time so I can get a lot of alone time that way, too.
Another quote from Guy seems to sum it up: "We do a lot of things together. But we also know that we need to do some things apart. And I think that is a form of collaboration, too". Spouses gave each other the freedom they needed to be themselves and to "breathe".
5. The Qualities That Make The Marriage Collaboration Exceptional.
Data generated by participants in this study seemed to indicate a variety of qualities in their marriage relationship that pointed to a strong relationship between the spouses. Some of these elements were mentioned by study participants in their interviews but most were observed during participant observation sessions. Some of these elements were best expressed by Karen in one of her interviews:
I think the most obvious to me collaborative effort I've had in my life is with my husband. And that's… certainly a mutual respect for each other, and just desire to be together and spend quality time together.
Certain behaviors on the part of participants indicated the value they put on their relationship. Study participants kept in touch with each other throughout the day via telephone, e-mail and fax. They expressed good feelings about their spouse, shared information about their spouse's current plans, and also shared about their past experiences and demonstrated pride in their accomplishments as a couple to others in their environment. Study participants also supported the emotional needs of their spouses, often putting their spouse's interests first or deferring to their spouse. When working on tasks side by side or separately in their home environment they often connected through dialogue or exchange of tasks. During such times some participants were observed to tap into a stream of mutual knowledge and information in order to perform daily tasks and function.
Some mentioned or demonstrated an orientation towards a future vision of togetherness as they planned their home environment or attendant arrangements. This was well expressed by Karen as she described the process she and her husband went through when they were planning to move into their new home:
When we moved into our home we…. spent many, many hours planning on that — how we were going to do it, what it was going to cost us, we also spent a great deal of time looking at houses, looking at what would be accessible for us, or looking at how much modifications did we have to do in that house. So that was certainly a… collaborative effort as husband and wife, to plan for a life together.
Study participants also showed an ability to disagree with each other, or to refuse suggestions when necessary. They used a sense of humor at times while interacting, sometimes as a means of overcoming hurdles in their collaboration. Some expressed that they had learned lessons over the time they had been together- one of which was to be flexible and another was to know when to be apart.
Guy and his wife, in particular, demonstrated a core of love and happiness which was evident in a participant observation session that occurred in their home. In this session, Sally helped Guy with his self-care by wiping his eye while he was managing their finances on the computer. He told me that he does the finances on the computer so that Sally doesn't have to do it, it is easier to work with, and they can get reports. During the time that Guy was doggedly working at the computer, Sally was happily playing the piano and singing along. Guy joked with me about Sally — how she often says she is going to bed early but then doesn't. Before she went in to bed, Sally came in and kissed Guy goodnight on the head. The qualities of mutual respect and love and allowing for individual differences and needs observed in this session were all indicative of the strong connection between them.
Discussion
As very little has been written about collaboration by persons with disabilities, this study helps to begin to fill that gap in the literature. The findings described in the category Practical Considerations and some in the categories Collaboration on Occupation and Structures and Patterns of Collaboration tend to focus on disability as an issue in the marriage collaboration, while the Social Considerations and Qualities that Make the Marriage Collaboration Exceptional categories described qualities in participants' collaborations or interactions with their spouses. The findings of this study indicate that the study participants collaborated with their spouses in a variety of ways in a variety of life areas and environments such as household management, transportation, safety, work, self-care, leisure, finances, communication, and spirituality. It was clear that they saw their spouses as valued long-term partners with whom they planned, decided, problem-solved, managed and delegated tasks in order to function effectively in their environment. Towards that end, they helped each other and were generally supportive of each others' interests, desires and needs while at the same time honing out a place for themselves. Although an imbalance was keenly felt by one participant about his contribution relative to accomplishing necessary physical tasks, it was helpful to him to try to focus on the overall contribution he made to his marriage.
This concept of imbalance and weighing the advantages and disadvantages of one's relationship is discussed in social exchange theory (Michener, DeLamater & Myers, 2004; Murstein, Ceretto & MacDonald, 1977; Duck, 1983; Cropanzano & Mitchell, 2005). According to social exchange theory, relationships are seen as an exchange between parties as an attempt to increase rewards and reduce costs, and that people evaluate relationships with others via comparing alternatives (Dowd, 1975; Murstein, et al., 1977).
It is difficult to contrast the findings of this study with research on non-disabled married couples because little research has been done specifically on the types of collaborations that non-disabled married couples engage in. Some of the findings of this study are supported by those of Berg, et al. (2003), who used open-ended interviews with young and old non-disabled married couples to determine how they used collaboration in their relationship. Most couples in that study reported that they collaborated with each other to make decisions and problem solve about managing finances, household repairs, and other major decisions such as where to live. Couples named a variety of patterns they used in their collaboration, such as division of labor due to traditional sex roles, interests, abilities and/or other motivations, or the use of lead roles in the collaboration. Some of those interviewed felt that they complemented each other in their approach. They reported few difficulties in collaboration.
Interestingly enough, some of the themes of this study are valued in a study by Guerin (2004). Guerin (2004) found that for couples in which one member of the couple had a chronic disabling condition it was important for them to "… learn… to support independent leisure" (p.139) and that shared leisure was a positive experience "… when it created opportunities to share humor" (p. 101).
Flexibility and working together seemed to be key elements in the marriage collaboration for people with disabilities. In the marriage collaboration, the person with a disability can try to emphasize and use his strengths and his spouse can fill in in areas in which the person with a disability has limitations. In the case of Guy and his wife, there was flexibility in their decided-on roles and sharing of the responsibility regardless of ability. To quote Guy: "Because we have been able to collaborate on almost everything it has taught me to be open minded and flexible". An excellent illustration of this is Guy and his wife's ingenious approach towards transferring Guy into their van, an approach in which they used unusual equipment and equally creative maneuvers.
At times, participants' collaborations with their spouses were reminiscent of some of Garee & Cheever's (1992) vignettes of the daily lives of married people with disabilities and the different ways in which they adapt. They also echoed Scheer and Luborsky's (1991) concept of the "disability ally" and notion of the developing interdependence between elderly spouses (Clark & Anderson, 1967; Depner & Ingersoll-Dayton, 1985). They support a concept of independence as being a state in which individuals are self-determining ( Longmore, 1995; Oliver, 1993; Parker, 1993a; Scheer & Luborsky, 1991; Nosek, 1993). According to Karen, there are several reasons why people might collaborate:
The need is the most predominant reason for working with someone else to accomplish some task. But… I think in addition to being just a need, I think also just enjoying life and just enjoying the time that you've had to do things is… part of your reason… certainly if you're with someone that you certainly enjoy being with… even though there's a need I think even beyond that there's a desire to get something done.
Participants used collaboration in their marriages as a vehicle for adaptation to the environment, because they had both a need and a desire to get tasks accomplished. These collaborations were self-reinforcing as they both strengthened their relationships with their spouses and were a sign of the strength in their relationships with their spouses. They were authentic in their interactions with each other. They had forged a life together. They enjoyed being together.
It should be noted that other than Guy's discussion of the imbalance in the "tangibles" in his marriage, Michael's fear of being alone, and Karen's desire for privacy and time to herself because she had so little due to her disability, participants said very little about difficulties in collaboration with their spouses. In fact, for Karen and Michael, their concerns were not really voiced relative to their marriage, but to their interactions with all people in their lives. The only minor point that emerged from the observations about difficulties in their collaboration with their spouses was that Sally and Guy told the researcher that they often argue when they are getting ready to go to church, and this was only reported, not observed.
It should also be noted that three of the four participants in this study were married to someone with a disability. This might have influenced the findings by making participants and their spouses more empathetic to each other. This could be one explanation for why the data had so little in it relative to difficulties participants experienced in their collaboration with their spouses.
Conclusion
The purpose of this study was to illustrate ways in which people with disabilities collaborate in their marriages. It also discussed some unique issues in the marriage collaboration for people with disabilities which can make it difficult for them, such as feelings of imbalance in the contributions to the marriage regarding physical tasks, a need for alone time or — conversely — a fear of being alone. A strength of this study was in the qualitative approach because it allowed the researcher to enter the world of the participants, thereby revealing their perspectives.
A limitation of this study was that the participants comprised a well-educated sample as three out of four persons had advanced degrees; therefore they may not be representative of a typical sample of people with disabilities. Also, all four of the participants were from a middle to upper socio-economic background, and three out of four of them were married to someone who also had a disability. All of the participants had their disability before their marriage; the range of the length of the marriage of the participants at the time of the study was from 17 to 24 years and participants were all middle aged at the time of the study. Finally, because this was a qualitative study with only four participants, the participants in this study do not comprise a representative sample of the population of married people with disabilities. Further studies involving participants from other educational and income levels and with other types and combinations of disabilities or disabled/non-disabled within the marriage are indicated.
It should be reiterated that this study was a subset of a larger study on collaboration by persons with disabilities, so although there was an original list of questions for participants, the questions did not focus on collaboration the participants experienced in their marriages. Therefore, the study and data were occupation based and the researcher did not ask participants about intimacy in their marriages. Nor did the researcher ask participants about the history of their marriage relationships. It would be helpful to look at such topics, including difficulties in the marriage collaboration — particularly focusing on times early on in their marriages. Other themes which were present in the data but not elaborated on in this article included concepts of family collaborations and ways in which parenting and child rearing by people with disabilities fit into the scheme of the marriage collaboration. These deserve further attention, development and study.
Finally, one of the areas of investigation in the literature about marriage among non-disabled married couples has been marital satisfaction. For example, Schaninger and Buss (1986) compared divorced and happily married couples on management of finances, financial consumption and decision making; Houlihan, Jackson and Rogers (1990) compared dissatisfied and satisfied married couples on decision making; and Baker and Kiger (1996) investigated the effects of "… gender, gender ideology, and type-of-earner marriage" (p. 168) on "… economic satisfaction, time satisfaction, and household-task satisfaction" (p. 167) in couples who were married and had children. As the data for the study discussed in this article had very little in it relative to difficulties participants experienced in their collaboration with their spouses, an interesting area for future research would be collaboration and marital satisfaction in the marriages of persons with disabilities. It would be interesting to determine what elements comprise desirable types of collaborations for persons with disabilities in their marriages and how collaboration in marriages of persons with disabilities contributes to or is related to marital satisfaction.
Acknowledgments
The author is most grateful to the study participants. I credit the late Jean C. Spencer, Ph.D., OTR, FAOTA for her suggestion of this line of research. I also thank Gayle I. Hersch, Ph.D., OTR, Sally W. Schultz, Ph.D., OTR, FAOTA, Rebecca I. Estes, Ph.D., OTR, and Diana H. Rintala, Ph.D. for their input, guidance and support. I thank Emily K. Schulz, Ph.D., Ph.D., OTR/L, CFLE for her support and suggestions. I thank Gayle I. Hersch, Ph.D., OTR, Virginia K. White, Ph.D., OTR, FAOTA, and Emily K. Schulz, Ph.D., Ph.D., OTR/L, CFLE for their assistance in data analysis. This article reports on a project in partial fulfillment for the author's Doctoral degree.
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| Name | Age | Gender | Disability | Education | Occupation |
|---|---|---|---|---|---|
| Guy | 52 | Male | Cerebral Palsy | Advanced Degree | Computer Programmer |
| Janice | 51 | Female | T-8 Paraplegia | High School | Self-Employed/Homemaker |
| Karen | 49 | Female | C1 - C2 Quadriplegia | Advanced Degree | Attorney |
| Michael | 52 | Male | C4 - C5 Quadriplegia | Advanced Degree | Manager |
| Practical Considerations | Collaboration on Occupation | Structures and Patterns of Collaboration | Social Considerations | The Qualities that Make the Marriage Collaboration Exceptional |
|---|---|---|---|---|
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