Abstract

This article explores the emotional challenges of mediated communication from the point of view of mediators who have close personal relationships with the people for whom they perform the mediating role. The article is based on the personal experiences of the three authors and on qualitative analysis of interviews with mothers and fathers of seven young adults who rely on mediated communication in their everyday lives. Our narrative highlights six key themes related to mediation within the context of close personal relationships: 1.The importance of parent/child communication; 2.The development of idiosyncratic communication systems — sometimes in defiance of professional constructions of what constitutes "real communication;" 3. The continued need for mediation after independent communication techniques have been mastered; 4. Parental concern about who will mediate in their absence; 5. Complications involved in parental mediation during the transition to adulthood; and 6.The problem of "blended voices" when both the mediator and communicator have an emotional stake in the communication.

Introduction

The term "mediated communication" is used in a variety of ways in the body of scholarly literature. It has been defined very generally as "communication that involves a process by which a message is transmitted via some form or medium" (Pavlik & McIntosh, 2004:70). The forms and media covered under this definition are diverse in the extreme. In the recent special issue of Disability Studies Quarterly on mediated communication (Brunson & Loeb, 2011), for example, authors explore issues related to a wide array of mediation phenomena including: augmentative and alternative communication systems (Boggis, 2011; Ferm, Andersson, Broberg, Liljegren & Thunberg, 2011; Flad, Berger & Feucht, 2011; Wangeman, Mahosky, McDermott & Anderson, 2011; and Wickenden, 2011); assistive listening devices, video interpreting services and telephone relay services (Chupina, 2011; Haualand, 2011; Segalman, 2011); cochlear implants (Mauldin, 2011); sign language interpretation (DeVault, Garden & Schwartz, 2011; Kermit, Mjoen & Olsen, 2011); and facilitated communication (Ashby, 2011; Bennett, 2011; Johnson, 2011; Stock, 2011; Stubblefield, 2011). Even the use of powered wheelchairs (Nilsson, 2011) and the production of animated music videos (Al Zidjaly, 2011) are examined as potential forms and media through which messages can be transmitted.

In recent decades, there has been a proliferation of work on the impact and potential of computer mediated communication (CMC) - including its possibilities (positive and negative) for individuals with disabilities and their families (see for example, Avery, 1998; Bishop, Taylor & Froy, 2002; Braithwaite, Waldron & Finn, 1999; Coulson, Buchanan & Aubeeluck, 2007; Gold, 1997; Junestrand, Molin, Tollmar & Keijer, 2003). Our goal in this article is to explore an older, more basic, form of mediated communication in which a human being is the mediator. We use the following conceptual definitions: To communicate is to "partake of, use or enjoy in common" (Gove, 1961: 460); and to mediate is "to form a connecting link, be in the middle" (Gove, 1961: 1402). Thus, by these definitions, to be a human mediator is to be the person in the middle — the link between people who are attempting to engage in shared experience. To serve as such a human link is a heavy responsibility fraught with challenges. Mediating appropriately can be particularly difficult when the content of the communication is very personal or highly emotional. Special challenges emerge when the "speaker," "listener" and "mediator" all have an emotional investment (convergent or divergent) in the content of the communication or the context in which it occurs. In childhood and early adolescence, parents generally perform the mediating role for individuals with speech and language differences. During the transition to adulthood, parental mediation can become awkward or inappropriate. Parents also worry about who will take on the role of mediator when they are no longer able to do so. Familial and non-familial age peers may replace parents as primary mediators. Like parents, close friends can find the blending of personal relationships and mediation challenging.

Methods

This study utilizes a mixed-methods approach to construct a narrative in which we explore the emotional challenges of mediated communication when human mediators have close personal relationships with the people for whom they perform the mediating role. The narrative is based on qualitative analysis of the autoethnographic accounts of the three authors and interviews with mothers and fathers of seven young adults who rely on mediated communication in their everyday lives. In the sub-sections that follow, these two data sources are described in more detail. In the first sub-section, we describe the authors' relationships with the individuals for whom they mediate and the social context in which mediation occurs. In the second sub-section, we describe the larger study from which the parental interviews are drawn.

The Authors' Autoethnographies. All three authors are involved in close personal relationships with people who rely on mediated communication. The authors' experiences involve three kinds of mediation: that between users of computerized communication devices (often called Augmentative and Alternative Communication Systems or AACSs) and others; that between people who hear and those who do not; and that between people whose speech is difficult to understand and others with whom they wish to share the bond of communication. We occupy four social positions with respect to the people for whom we mediate: mother, sister, personal care assistant (PCA), and close friend. In constructing our narrative, we draw on Priestley's (2003) life course approach to the Social Model of Disability to examine mediation at various points in the family life course. We focus particular attention on the challenges of mediating within the context of close personal relationships during late adolescence and early adulthood — as the torch of mediation often passes from parents to others. In this work, we examine the complexity of mediated communication from the vantage point of the mediator. That is, we explore the social experience of being the human link between people attempting to share a common experience. While the focus of this study is on the complexities and emotional challenges of mediating, all three authors also view their mediating experiences as rich sources of personal and social rewards.

Beth has both a brother and a daughter who are deaf. As a consequence, she has had life-long experience as a familial mediator. She also has experience as a qualified American Sign Language (ASL) interpreter and teaches ASL at the University of South Florida:

The familial experience with my deaf brother, Robert, is a gift and blessing, which prepared me for my journey as a parent of a deaf child. As a mediator, throughout my life, I have provided a wealth of information to my brother and daughter with great joy. The gift I now have of using the vibrant language of ASL has blessed my life. With ASL skills, I am now able to share information in the silent world beyond my own family.

While Beth's mother learned signed English and her father and siblings learned to fingerspell, Beth is the only one of Robert's five siblings who is able to sign fluently with him in ASL. She was, and still is, often called upon to mediate in communications between her deaf and hearing siblings as well as between her deaf brother and the wider hearing world. In the early years of her childhood, like her mother, Beth used signed English. She tells a story of an event in her childhood that clearly illustrated to her the advantages of ASL over signed English. This event also exemplifies the complexity of mediating when one is also a participant in the social context in which the mediation takes place:

In Haiti, sitting on a pew in church, I listened to the French/Creole teachings of the pastor. Another person interpreted the sermon into spoken English for visitors. Before I knew it, I was attempting to translate the English into sign language for Robert and a deaf Haitian in the congregation. The deaf church member did not quite understand my signed English. An unusual form of complex mediating/interpreting quickly occurred as Robert joined me to interpret my signed English into ASL. At last, the Haitian pastor's words reached the deaf church member's eyes. Do I remember anything from the pastor's lesson? No. To me, the message was lost in the mediation.

Beth's daughter Landis Dae is one of the 90% of deaf children born to two hearing parents (Grosjean, 2010). However, since there is a familial background of deafness and both parents are fluent in ASL, Landis Dae experiences a life that is, in many ways, different from that of most deaf children born to hearing parents. When hearing parents receive a diagnosis of deafness or hearing impairment for a child, they are thrust into the world of disability (McKellin, 1995). Like other family members of people with impairments, they may become targets of stigmatization (Goffman, 1963, Green, 2003b, 2004, 2007). They are also faced with critical and immediate choices about how best to meet the communication needs of their child (Jackson and Turnbull, 2004). While Beth's family was no exception, she was better prepared than most hearing parents to make a decision. She writes:

When my daughter was four months old, the family was told by a doctor we had never met, "she is profoundly deaf and a candidate for the cochlear implant." We were left with a lifelong linguistical/communicative decision to make. The decision would impact Landis Dae, her siblings, extended family, and our familial dynamics forever. Although professionals encouraged a cochlear implant (CI), we quickly and adamantly rejected the notion. My linguistic and cultural background strongly, influenced the decision to use sign language for communication as opposed to surgery with the CI, or speech therapy. The decision to use American Sign Language (ASL) as a primary language for communication and cultural identification was based on my family experience and insight into a cultural approach to raising a deaf child.

In the pages that follow, we use the word "deaf" to refer to a profound hearing loss and "Deaf" to refer to the culture of people who use ASL to communicate and have a common heritage and beliefs (Reagan, 1995; Senghas & Monaghan, 2002). Beth and her husband chose to raise their deaf child in a Deaf world in order to give her the cultural and linguistic opportunities that world can provide.

Despite the advantages of raising her daughter within Deaf culture, Beth is still called upon to mediate for Landis Dae — even within her own family:

I believed hearing friends and family that did not know ASL would learn. I have come to believe that the gift of ASL is bestowed on some more than others. Some of my hearing siblings, some of my older children, some of my friends and their children have learned some sign. Others have not. Their communication is brief and superficial unless I mediate for them.

Beth is increasingly feeling overwhelmed by the need to ensure that Landis Dae "hears" every sound in her environment. Nearby conversations, laughter, running water, the cat scratching at the door all have meaning and establish the context of social situations. Without mediation, Landis Dae is at risk of being left out. Beth has obtained permission from Robert and Landis Dae to share her experiences as their family mediator. They have chosen to use their own names rather than pseudonyms.

Katie has had a variety of experiences with friends and age peers who use Augmentative and Alternative Communication Systems (AACSs) that are attached to wheelchairs. These AACSs are computerized systems that accept adapted keyboard input, employ sophisticated word/phrase recognition technology and produce computer synthesized speech that is of relatively high quality. Katie worked with AACS users who received services from her university's disability services office; served as a personal care assistant to an AACS user; and lived in a dorm with students with disabilities. She also became a counselor at a summer camp for people who use AACSs. Of her camp counseling experience, Katie says:

I remember these summers to be a lot like an ethnographic study of a foreign place. This was especially true in terms of language. Campers had their own language outside of the communication device. How else would they talk about how mean or annoying the camp counselors were? It was as a camp counselor that I heard the best and the worst stories about discrimination and activism, abuse, and mediated communication.

Through these work and volunteer experiences, Katie developed close, lasting friendships with AACS users. She has been called upon to mediate for her friends in a variety of circumstances including everyday interactions with the public; family gatherings; and formal encounters with the social service, educational and health service systems. Some of these situations have involved high stress, emotion-laden content. In preparing this article, Katie shared her stories about the difficulty of juggling the friendship and mediating roles. In order to protect the privacy of her friends, we have withheld their names, diagnostic labels and the specific details of their stories. Instead we have used Katie's collective experience in order to illustrate the complexity of mediating within the context of close personal friendship.

Sara is the mother of a young woman with severe cerebral palsy (CP). Sara began to write about her mothering experiences when her daughter, Amanda, was in middle school (Green, 2002). She didn't want to share these experiences until Amanda was old enough to give her assent. Sara reads everything she writes about her parenting experiences to Amanda prior to submission. As a natural extravert, Amanda is very happy to share her life experiences through her mother's work and has chosen to use her own name in this and other publications. Amanda is now 27 years old and requires assistance with all activities of daily living. She drives a power wheelchair with head controls because she is unable to use her hands. Unlike Katie's friends, visual impairments related to Amanda's CP make it impossible for her to reliably read small print, preventing her from using an AACS. Amanda has worked extremely hard to develop her limited capacity for speech. From the time she was a very little girl, communication has been her goal — far more important to her than mobility. With years of speech therapy and her own concerted efforts, against all odds, Amanda has developed the ability to speak and enjoys doing so. Her vocalizations, however, are limited to short phrases, and her speech is very difficult (sometimes impossible) to understand. Mediation is required for her to communicate with anyone outside of her closest circle of friends and family. She is very motivated to communicate with others so lots of mediation is required. Now that Amanda is a young woman, Sara is finding it increasingly difficult to mediate for her. Her roles and mother and mediator are often in conflict.

Amanda currently lives in an apartment attached to her parents' home and receives assistance through the Medicaid Waivers program. Because her impairments would prevent her from being able to remove herself from harm's way, except when she's asleep, she is never left alone. She is able to call for help from her bed through a monitor system that is always on. She has help from paid personal care assistants during the day Monday through Saturday. Her parents provide her care the rest of the time. One of her regular caregivers is a very close personal friend. Sara explains:

My husband and I are thrilled that Amanda's best friend, Brandi, has become one of her paid assistants. Watching Brandi grow from the little girl who used to spend the night at our house for "sleep-overs" to the competent, caring young woman who serves as a companion and personal care assistant for Amanda has been amazing. Brandi and Amanda met in middle school where Brandi was in the ESE program due to her learning disabilities. They became instant friends. From the time they met, Brandi told her career counselors that she wanted to work with people in wheelchairs. There was some professional skepticism about Brandi's capacity to meet this goal, but she proved the doubters wrong. She has become an excellent caregiver. Brandi has developed an amazing ear for speech that others find difficult to understand. It is with awe that I observe Brandi taking over my role as Amanda's primary mediator and with some chagrin that I realize that, with increasing frequency, she is able to understand Amanda when I cannot.

Brandi and Amanda participated in the selection of the examples included in this article. Like Amanda, Brandi has chosen to use her own name rather than a pseudonym.

The Qualitative Interviews. Over the past decade, Sara has been engaged in a multi-method study of the social experiences of parenting children with disabilities across the family life course (Green, 2001a; 2001b; 2002; 2003a; 2003b; 2004; 2007; Green, Barnhill, Green, Hawken, Humphrey & Sanderson, 2011). Transcripts of the in-depth interviews conducted as part of this on-going study were analyzed for themes related to mediated communication. The voices of these mothers and fathers are included along with those of the authors as we construct our joint narrative of mediation at various points in the life course. All components of Sara's study were reviewed for human subjects research compliance by the University of South Florida's Institutional Review Board. Pseudonyms are used for study participants and their family members.

Analysis and Findings

Using Mark Priestley's life course approach to the social model of disability as a conceptual template, we analyzed the content of conversations and Email correspondence among the three authors and the parent interviews for themes related to the challenges of mediated communication at various points in the life course. This analysis resulted in the identification of six major themes, which are presented in the sub-sections that follow.

The Importance of Parent/Child Communication. "Language is the basis of our knowledge, self-knowledge and sociality and community. It is, many people think, who we are" (Heim (1993) in Bishop, Taylor & Froy, 2000:1078). Parents yearn to know their child through the vehicle of language. Communication is a crucial part of the expected parental narrative (Mont, 2011). Language connects the child to the family and the family to the community. When a child cannot hear or hears but cannot speak, unprepared parents often feel shattered by the loss of this critical social bond. One of the mothers who participated in interviews with Sara and her research team says of her son who has multiple, severe disabilities associated with the autism spectrum: "…the thing that hurts me the most is that I'll never know what's in his head. He'll never be able to tell me what he thinks" (Jane). Similarly, in Disability Studies Quarterly's special issue on mediated communication, Daniel Mont says of his experience as the parent of a young man with high functioning autism:

I love Alex dearly — and he has brought an amazing richness to my life in part because of how he has cast light on communication and socializing that I wouldn't have thought about for two seconds without him. But still, I cannot talk to him like I can speak with my other son, Simon. Simon and I can talk for hours, breezily segueing from personal topics to silly topics to intellectual ones (Mont, 2011).

One of the father's in Sara's study also expresses concern about his inability to use language to fully connect with his daughter who, like Alex, has a disability on the mild end of the autism spectrum: "I wish I were closer to her. When I say that I mean with her difficulties communicating…I wish I could sit down and converse with her" (Eugene).

When communication does not come easily, parents often go to great lengths to create a communicative bond with their child (Mont, 2011). They may feel tremendous pressure to become the child's link to social life. Another mother of a child with disabilities on the autism spectrum says: "The thing I did realize is that it was going to be pretty much up to me to try to bring out what needed to come out in her…that I was the one that was going to have to reach her…whatever's in her, I'm the one who has to bring it out…" (Susan). Parents may also worry that their child might experience emotions, needs, desires that he/she can't communicate. That worry can be devastating — trumping worries over physical health. A father of a young man with severe CP and associated language impairments says for example: "The biggest challenge is to provide for him, not only physically, but emotionally and mentally…of him not going to bed without having expressed himself…" (Paulo).

These parental worries are not without grounds. Being unable to communicate one's needs, wishes, thoughts, and preferences can be terribly frustrating for children as well as parents (Boggis, 2011; Flad, Berger & Feucht, 2011). Sara's daughter Amanda, for example, cried herself to sleep every night until she was five years old. Nothing would stop her. Her parents tried everything imaginable. Her doctors and therapists were convinced it was a way for her to "let off steam." While possibly true, the theory didn't ease the heartache Sara and her husband felt in the face of their utter inability to provide comfort to their daughter or to understand her distress. Then one day, Amanda learned to say "bed" and never cried herself to sleep again. Sara explains:

Our guess is that being able to say the word gave her the power to communicate to us that she was tired — thereby giving her a feeling of control over the act of going to bed. Whatever the reason, we were profoundly grateful for this small act of communication and the resultant peace with which it infused our household.

The Development of Idiosyncratic Communication Systems — Sometimes in Defiance of Professional Constructions of what Constitutes "Real Communication." The drive to communicate with one's child may lead families to develop idiosyncratic communication systems. For Beth's family, the choice to raise their daughter in the Deaf community solved the problem of how to communicate with their deaf daughter. Communication developed naturally with the widely utilized and vibrant language of ASL. For parents of deaf children who lack familiarity with the richness of Deaf culture and the language of ASL, and for those whose children's language impairments stem from other causes, however, the solution is far less clear-cut. Sometimes parents rely on their ability to intuit their children's needs and wants as a means of communication — especially when children are young and their needs are relatively predictable. As one mother put it "We're very intuitive about what he wants…We've come to know what he's after" (Jane). Another parent says: "I can look at (him) and he looks at me and I know exactly what he wants, what he needs, just by the minimal movement of his eyes, his look, his stare, his mouth. It all comes together into a phrase" (Paulo).

Parents and children may also use simple sounds as a means of communication. Both parent and child may derive tremendous satisfaction from the bond such sounds can create. In his exquisitely sensitive, nuanced book about life with his severely disabled son, Ian Brown says for example:

As he grew older, we developed a private language of tongue clicks that only he and I speak. All we ever seem to say is, "Hello, it's me. I'm clicking to you, and only to you, because only you and I speak Click"; to which he (or I) reply, I think, "Yes, hi, I see you there, and I am clicking back, I like that we speak our private language, in fact I find it hilarious." This is very enjoyable for both of us (Brown, 2009:34).

One of Sara's interviewees tells a remarkably similar story about the way he and his wife learned to communicate with their daughter:

She has certain phrases and certain things that she's created that are her language and other people don't understand them, but in the context of our family…she'll come up to me and say "see-er, see-er" and I'll say "see-er, see-er" and it makes her happy that I've said "see-er, see-er" when she says "see-er, see-er" because we just communicated…the biggest challenge has been staying in touch with (her)…reminding ourselves that we have to live somewhat in her world in order to make things function and balancing that with the outside world…(Allen).

For children who have the intellectual capacity for language but for whom physical impairments make both speech and sign impossible, families often learn to interpret "eye gaze" and/or small body movements as a means of communication. Some families develop sophisticated systems based on such subtle bodily cues. The son of one of Sara's study participants uses a very complex form this idiosyncratic communication in which he spells words by nodding "yes" or "no" as his parents systematically move through the alphabet. His dad describes the development of this system:

He understood everything. I mean…he's normal, but he cannot express himself. So…it was how are we going to make him able to talk to us? By eye gaze, by minimal body motions, movements, we were able to communicate with him…People used to go to us: "I know you're talking to your child. (He's) not talking to you and you are having a conversation without him talking."

Similarly, the mother of a young woman with a very severe form of muscular dystrophy describes the way in which she communicated with her daughter before her death:

We tried different things over the years, but we ended up with eye movements. I would give her numbers and say "2 plus 8 is 10 or 9" (holding up two hands one to represent 10 and one to represent 9) and she would use her eyes to go in a direction towards the answer. Intellectually she was pretty normal. She knew words: addition, subtraction, multiplication. It was pretty hard to get information out…We looked for new ways to communicate with her. We tried different devices, but she kept getting worse (Cindy).

While these idiosyncratic communication systems are generally very comforting to children and their parents, they may be discounted by professionals. Jane, for example, is convinced that many of her son's teachers (and in fact most people outside of their family) doubt his ability to communicate at all and often misinterpret his behavior as mindless. She feels certain his actions show intent to communicate — though perhaps not intent to conform. She gives the following example:

One day, he was in school and they told me…he didn't know his colors, and I know he knows his colors. I went in his room…and I said: "give me a purple peg." Well he gave me an orange, he gave me a green, he gave me a blue, he gave me a red, but he wouldn't give me any purple pegs…I went back just to check on him a couple minutes later. He'd taken all the purple pegs and put them in a stack. So, I knew he knew what I wanted…but it confounds other people because if you don't know him and you aren't familiar with his method of operation, you think "Man, this kid doesn't know nothing. He's really slow."

The discordance between parental and professional views of what constitutes appropriate communication is probably rooted in the nature of western capitalist values (Oliver, 1990). Our society places high value on independence and productive capacity. Teachers and other professionals are charged with the responsibility of maximizing the child's potential for independence and productive work. They are held accountable for progress in these areas — not for progress toward the kind of interdependent bonding that children and parents crave (Priestley, 2003). Parents, teachers and medical service providers are, in many ways, held hostage to the social construction of childhood as a period of preparation for eventual participation in western capitalism. Deviations from this cultural script are problematized (Darling, 1988; Priestley, 2003). As a consequence, like Beth, many parents of deaf children are encouraged to accept cochlear implants and speech therapy because of the belief that this will foster independence and employability in adulthood. Children with speech and language impairments due to CP or other neuromuscular diagnoses are encouraged to use AACSs. Parents of children with "delayed" language are pressured to provide speech therapy. Both the widely utilized language of ASL and the idiosyncratic communication systems developed by families are often discouraged because they are not viewed as "real speech" that will lead to employability. The following is a fairly typical example of parental/professional disagreement over familial use of idiosyncratic communication:

(She) just loved music from the first time we introduced her to an old 45 record player. She would listen to it and was fascinated by it and eventually she would repeat the words of the songs and we found that by her repeating the words to the songs we could interact with her by singing the songs ourselves or…saying the words back to her and she eventually…began to learn that as a way of communication…So she picked up on that and that led on to the next level of understanding…She didn't know how to communicate with us, couldn't say what she needed or wanted, but she did know this response back and forth or repeating the words of the song…We were told by many of the people, the professionals in the field, not to do that because…it was called echolalia and it created a problem because it was not true communication it was only echoing or saying back the language (Allen).

Allen and his wife decided, however, to resist this professional construction of appropriate communication. They were not willing to give up the connection they felt they were making with their daughter through their private language. Allen explains: " …we both, after talking about it at length, disagreed with that saying this is our child, this is our communication with our child. We told them it doesn't matter what you say, you have the point of view of someone outside the family unit and you don't understand the situation we're in." Allen's daughter, now in her 30s, has learned to use English words and phrases and is able to communicate her basic needs and desires to non-family members who know her well. Despite the development of these communication skills, she and her parents still derive pleasure from the "language of their own" that they developed during her childhood. Her parents and paid personal care assistants mediate for her in communication with strangers.

For children with "normal" cognition who cannot sign, parents are encouraged to push the use of AACSs in the hope that this will aid in independent communication and ultimately lead to employability. AACS use can indeed open doors to communication with the wider world — especially as children develop and their communication needs become more complex. Paulo describes the family's eventual acceptance of the AACS as a means of communication:

He used to spell…He had a board of letters that he'd just go through and he used to go like this (looking at letters) to communicate. We developed a communication with him without using a system that he needed…but now, of course, sentences are longer, his thoughts are more complex and we get frustrated…He's getting to the point now that he uses his (system).

Katie's friends have successfully utilized their AACSs to navigate the complex social and academic worlds of large public universities. Without their AACSs, this opportunity may have been denied them.

The Continued Need for Mediation after Independent Communication Techniques have been Mastered. Whether individuals use ASL, AACSs, or an idiosyncratic system, mediators continue to play an important role in the lives of individuals with language differences. Unfortunately, despite an increase in the number of hearing individuals who learn at least some ASL, as Beth points out, even in families of deaf individuals, not everyone is fluent in this language (Zinza, 2006). When deaf individuals step outside of Deaf culture, interpretation is usually needed.

Similarly, AACSs, while tremendously beneficial, are also not a universal communication solution. Even for those with the combination of cognitive, manual and visual skills necessary to use them, they are difficult to use — especially if the user is tired or under stress (Wickenden, 2011). If, as is often the case, AACSs and adapted keyboard entry systems are attached to wheelchairs, they may be unavailable when the user is out of his/her chair. Katie, for example, has been called on to mediate during doctor and dentist appointments as well as in emergency hospital visits. In these situations, AACS users are routinely separated from their devices when they are transferred out of their chairs. Without mediation, they may be left without a voice. AACSs also frequently break down and repairs can take hours, days, weeks or even months. Katie was once called on to mediate for one of her friends at a family funeral when the friend's AACS was in the shop for repairs. For Katie, this experience was fraught with conflicting emotions. She wanted to help her friend, but felt out of place as a stranger thrust into the midst of a highly personal and very emotional moment of family communication. Without her mediation, however, her friend would have been unable to participate in the celebration of her relative's life because her AACS was unavailable. This example illustrates the continuing need for mediation even when "professionally approved" forms of independent communication have been mastered.

Parental Concern about who will Mediate when they Cannot. While mediating for one's young child is not particularly problematic and happens in most families with and without disabilities, as children age into adolescence, parents have serious concerns about who will be the "link to life" for their child when they are no longer able to mediate. They begin to look (or at least hope or pray) for others who can take on this role. One family in Sara's study has recently placed their teenage son in a residential school. Among the many factors affecting this difficult decision was the desire to help him develop ways to communicate with people outside the family. Jane explains:

…it really scared me to think that one day we wouldn't be around and he would have absolutely no skills to communicate with anyone other than us…And I thought, "I'm not going to let that happen to (him). I know we're not going to live forever…He's got to learn."

Research suggests that Jane's concern is well founded. People with disabilities are vulnerable to victimization and abuse (Bryen, Carey & Frantz, 2005; Howe, 2000; Rand & Harrell, 2009). Individuals who lack functional speech are particularly at risk and may face enormous challenges when they attempt to report crimes and seek prosecution of perpetrators (Bryen, Carey & Frantz, 2005; Bryen & Wickman, 2011). Parental fear that children might be left voiceless in a potentially hostile world can mobilize efforts to find and cultivate trusted others to whom the torch of mediation can be passed.

Complications Involved in Parental Mediation during the Transition to Adulthood. The ordinary need for teenagers and young adults to separate from their parents can also play a role in the search for non-parental mediators. Parental mediation of conversations for a teenager or young adult may become uncomfortable, awkward or inappropriate. Adolescents often prefer to communicate with friends as they begin developing their own identity and want to separate from parents (Papalia and Olds, 1992). Youth culture plays an important role in the development of individuality and preparation for independence (Arnett & Taber, 1994; Noom, Dekovic & Meeus, 2001; Priestly, 2003). While western culture supports the development of independence and individuality, the youth culture within which these characteristics typically develop often involves activities that adults find "deviant" or "risky" (Engels and Ter Bogt, 2001; Priestley, 2003). Young people with disabilities are rarely free from the "adult gaze" or the surveillance of parents and professionals. They may be unable to participate in the activities, and within the spaces, that are markers of youth culture (Evans and Furlong, 1997; Priestley, 2003; Riddell, Baron and Wilson, 2001; Tisdall, 2001). Continued reliance on parental mediation during the transition to adulthood is particularly problematic. Sara, for example has begun to feel that there are some conversations in which her role as mother and her role as mediator are confusingly conflicted:

I realized several years ago that being the link in the middle when Amanda talks to her boyfriend was becoming awkward. Unless they are face to face, their communication is complex. He is able to text using his AACS, but Amanda has neither the visual acuity nor the manual dexterity to text or use an AACS. She can talk on a speakerphone, but he cannot. So, she dictates what she wants to say and someone (a special someone who understands her speech - and there aren't many candidates) types her text to him. He then texts her in return and someone reads the text back to her. This is obviously not a role for a mom. So, Brandi has become the link in the middle. But it is far from a perfect link. One night, after many back and forth texts, some confusion due to spelling errors, perhaps a blending of Amanda and Brandi's voices, increasing frustration and escalating emotions, I suddenly received a text on my phone: "Sweetheart, I wish you could text without help." In the heat of the moment, Amanda's boyfriend pushed the wrong button and I got a message that was never intended for a mother's eyes…it could have been worse. My thoughts were full of conflict. What do I do now? Do I intervene and try to find out what's gone wrong? Do I even want to know? What is my role here — accidental mediator or mom? In either case, is it any of my business?

Fortunately, Amanda and her boyfriend are much better able to communicate when they are face to face in the same room. Since they live about 30 minutes apart, they are able see each other fairly frequently. For Beth's Deaf daughter, however, friends are spread across wide geographic distances:

During the teen years, my older children preferred to communicate with peers from school and the neighborhood/community. However, Landis Dae, who is now a teenager, does not have the same opportunity. Most of her Deaf peers reside cities or states away. They communicate through the videophone with use of ASL. As a result of technology, communication barriers have improved considerably since my Deaf brother and I were young; however, opportunities for face-to-face interaction between my daughter and her friends who live hundreds of miles away are limited. There are even greater limitations involved in her communications with individuals who are local and do not sign.

Like Sara, Beth finds that mediating between her daughter and hearing age peers is increasingly complex and sometimes awkward. Beth says:

At times when mediating communication between my daughter and her hearing teenage friends, she will interject a signed comment to me and I mistakenly voice what she meant as a private communication. She may quickly change and want me to voice one sentence to a hearing cousin or friend, and then have me leave the room, so I won't know what they say in reply. The switch from mom to mediator and back to mom in an instant is taxing. The mediation becomes more complex as she ages and wants to separate from her parents and develop her self-identity.

The parents of the young adults in Sara's study are also beginning to find their mediating roles challenging. A father of a young man with CP, for example, is feeling the awkwardness of being the link in his son's life — especially in matters of sexual feelings and expression. He worries:

When he was younger, it was normal for him to be home with us. It was normal for him to be with us. It was normal for him not to do certain things. But now…certain things, I'm afraid to ask him or even talk about because it is…Let's face it. He's normal in all aspects of the word except physically.

Even when teenagers and young adults have gained the skills needed for independent communication, extricating one's self from the role of parental mediator can be difficult. Patricia, for example, is trying to wean herself and her teenage daughter who has a diagnosis on the autism spectrum from reliance on mediation. She is conflicted about how to accomplish this goal without creating socially awkward situations for her daughter, herself and the others with whom her daughter interacts:

I just want her to…respond without prompting. So, you kind of do that little dance and hope you get it right…That's still an issue because if somebody asks her a question then she will look to me…or she will hesitate…and so I will prompt…you don't want your kid to become rude, but then it becomes awkward.

The Problem of "Blended Voices" when both the Mediator and Communicator have an Emotional Stake in the Communication. Mediation for family members or close friends involves an embedded conflict of role expectations. The role of professional ASL interpreters is to provide a direct, accurate link between individuals who are hearing and those who are deaf. Interpreters are not expected to become involved with the emotional content being relayed. Similarly, personal care assistants to AACS users are expected not to interfere in the user's communication with others unless the device fails, or unless they are asked for assistance by the AACS user. Even then, the mediator's opinions and emotions should not affect the message passed from communicator to listener. When a professional personal care assistant mediates for a consumer without an AACS, the assistant is expected to communicate exactly the meaning the consumer intends to convey.

When a family member or close friend who is emotionally involved with the shared conversation is asked to mediate, however, these rules can be very hard to follow. In being true to the expectations of the role of mediator, the mediator's own voice may be lost or may become blended with that of the person for whom he or she is serving as the link in the chain of communication. Beth tells a very poignant story that clearly exemplifies the problem of blended voices:

Mother is dying of cancer. One of my four brothers, my sister, my eldest son and other local family members sit and wait for a phone call from the oncologist. We will discuss treatment options, or mother may declare her right to have none. The phone rings. We all react with anxiousness. But wait, it's the videophone. Robert is calling to be included in the conference call. He will use the Video Relay Service to provide interpretation on the videophone when the doctor calls on the speakerphone. I am relieved! I have interpreted/mediated communication for the family as long as I can remember. The doctor hasn't called yet, so we will wait to beckon the interpreter. My hearing brother jumps up to "talk" to Robert. Mom yells, "Let Beth talk to him. She knows how. You come help me with a few things." Mother can sign, but it is difficult for her to get up and move to the videophone. Naturally, I walk over to the phone and gladly converse with Robert. He lives out of town, and this is the first time we've "spoken" since Mom's diagnosis of stage four Cancer that originated in her lungs. As he and I discuss profound emotional issues—such as Mom's options, the fact that she never smoked, alternative treatments which healed his friend of cancer, funeral arrangements and other heart-wrenching issues—I hear multiple conversations between family members in the room. My aural senses trigger my desire to respond orally. I want to be included in what is transpiring in the room. I have to choose which conversation to be a part of. Or, become the impartial interpreter so Robert can be included in the conversation taking place within the room. My training as an ASL interpreter pulls me to the later course of action, but my emotions as daughter and sister are underlying. Confusion sets in. Am I speaking, or is Robert speaking through me? Am I signing to my brother or am I interpreting for my family as they speak to him? I voice a question to Mom. She is tired, stressed, in pain. She says: "You already know the answer to that question. You went to the doctor's appointment with me." I tell her I was interpreting for my brother. Her tone changes and she answers the question. I continue my signed conversation with my brother. We discuss opinions about mother and our spiritual views. I overhear discussion about funeral plans. Robert and I react as siblings who share a common language and discuss the uncomfortable topic. Then I realize that I didn't say anything about my views to the hearing family members — not even to my mother. I have lost my voice in the matter. Oh God, where is my voice? Silently I think: "when will the doctor call so that we can contact the interpreter?" Too much time has passed. Robert must hang up to tend to his family. I say "good-bye" and turn to visit with Mom, but she is ready to go see her attorney. I missed spending that short time with my dying mother, because I know how to talk with my brother. But that's OK. His silent voice was heard and hearing family members' voices seen. At home, tears streaming down my face, I think "I'll be the mediator. It's OK" and then I cry: "Oh Lord, please hear my voice."

Unfortunately, Katie has had terrifying experiences in which her friends were abused or neglected by caregivers. Katie accompanied them to the hospital emergency room and was asked to mediate in conversations between the friends and health care professionals. Like Beth, Katie had to curb her own emotions and her instinct to express her own rage at the abuse in order to serve as an effective mediator. Katie's experiences further illustrate the difficulty of separating personal and mediating roles in the context of emotion-laden situations.

Mediating for Sara's daughter Amanda is also complicated for her friend and assistant Brandi. Sara says:

Like all close friends, they need to compromise on decisions about where to go, what to do and with whom to do it. From the point of view of the Medicaid Waivers Program and Brandi's boss, however, the assistant (Brandi) should not make these decisions. The consumer (Amanda) should take charge. That kind of one-sided decision making would be hard on any friendship. When they are making plans with other people via text or phone, Brandi must mediate for Amanda. So, on a daily basis, she must balance all of these roles. It's not easy. Sometimes Brandi's voice is lost in the process. Sometimes it blends with Amanda's. Sometimes it overpowers hers. When emotions are running high, it's very hard for anyone to know whose voice has been privileged in the decision. It's an evolving, imperfect, but absolutely necessary system. It is Amanda's link to the world.

That's the challenge of mediated communication within the context of close personal relationships and there is no simple answer to the question of just how it should work.

Discussion

Based on the stories told in the parent interviews and the authors' own narratives of their experiences with mediated communication, we have identified six key themes: 1. Communication is an incredibly important part of parenting and parents will go to great lengths to create a communicative link with their children; 2. If an "ordinary" means of communication does not exist, parents and children will develop idiosyncratic communication systems — even if this requires the defiance of professional constructions of what constitutes "real communication;" 3. Parents are often the primary mediators between their children and the outside world in childhood and early adolescence, but this role can become uncomfortable during the transition to adulthood; 4. Parents worry about who will take over when they are no longer able to mediate for their children; 5. Mediating highly emotional content can be particularly challenging to all parties; and 6. The need to separate one's own emotions from those of the person for whom you are mediating can create an uncomfortable situation of "blended voices" when both the mediator and communicator have an emotional stake in the communication.

In this article, we have explored the complexity of mediation from the vantage point of the mediator who has a close personal relationship with the person for whom the mediating role is performed. We have focused particular attention on mediation in which the goal is to "partake of or enjoy a common experience" rather than simply to convey factual information. That is, we have explored the experience of being the link in the middle — the person charged with the sometimes daunting responsibility of facilitating the enjoyment of shared experience by others. This focus, of course, represents only one piece of the complex puzzle that is mediated communication. It begs the more important question of what it is like to have to rely on a person in the middle in order to share such experience. The collection of articles in the special issue of Disability Studies Quarterly on the topic of mediated communication (Brunson & Loeb, 2011) explores many facets of this complex phenomenon. Taken together, they clearly indicate that, like all aspects of disability, mediated communication is no simple matter. Our narrative supports their findings. As Tom Shakespeare suggests in his thought provoking contribution to the special issue, neither theoretical models nor individual narratives ever fully capture the complexity of the lived experience of disability. He says: "I have learned that in real life, there are more twists and turns. The black is not entirely black, and the white turns out to be a different colour entirely" (Shakespeare, 2011). It is our hope that future work will continue to examine the nuanced experience of mediated communication from the point of view of all of the players in this complex, important and fundamental aspect of the disability experience.

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