PEER SUPPORT: WHAT ROLE CAN THE INTERNET PLAY?

by Sheryl Burgstahler, Ph.D.

University of Washington

sherylb@cac.washington.edu

http://weber.u.washington.edu/~sherylb

Originally published in Information Technology and Disabilities Vol. IV. 1997

ABSTRACT

The need to provide access to mentors and adult role models for students with disabilities is well-documented. However, peer relationships also offer developmental opportunities that should not be overlooked or undervalued. Peers can act as role models, offer friendship, advice and information, promote a sense of belonging, and empower each other. The experiences of an active electronic community of high school students with disabilities demonstrate that computer-mediated communica tion (CMC) provides an environment where rich peer relationships can be experienced.

The results of a study of participant experiences suggest that CMC between peers can help ease the social isolation and advance the academic and career goals of students with disabilities.

INTRODUCTION

Many young people with disabilities have few friends and limited support from peers (Gottlieb & Leyser, 1981). They often report feelings of rejection and isolation. The impact of social isolation is far-reaching, affecting not only friendships, but also academic and career success (Hawken, Duran, & Kelly, 1991). Ultimately, people with disabilities experience higher unemployment rates and lower earnings (McNeil, 1997).

As the end of high school approaches, so does the termination of a structured environment and pre-college support systems (Burns, Armistead, & Keys, 1990). When compared to people without disabilities, people with disabilities are less prepared to meet the challenges of adulthood, more likely to continue to live with their parents after high school, and engage in fewer social activities (Moccia, Schumaker, Hazel, Vernon, & Deshler, 1989 ).

Students with disabilities are rarely encouraged to prepare for challenging fields such as science, engineering and mathematics, and they are less likely to take the courses necessary to prepare for post-secondary studies in these areas (Burgstahler, 1994; Malcom & Matyas, 1991; National Science Foundation, 1997).

Although higher education can enhance their employability and vocational success, fewer young adults with disabilities participate in post-secondary education and, of those who begin such programs, disabled students are more likely than non-disabled students to drop out of school prior to completion (DeLoach, 1992; Moccia et al; Wagner). Adolescents with disabilities who wish to attend college are often faced with responsibilities they are unprepared to meet because they are conditioned to depend on others, and they lack self-advocacy and independent-living skills (Transition summary, 1988). Those enrolled in college often hesitate to request the specific accommodations they need (Amsel & Fichten, 1990).

The levels and types of resources available to students with disabilities change as students move from pre-college programs to post-secondary campuses and to employment situations, and programs to help bridge the gaps between these critical stages are rare. Students with d isabilities can benefit from interactions with peers and adults with disabilities who are pursuing and participating in academic and career activities that they might otherwise have thought impossible for themselves. However, they are often isolated by great dist ances, transportation and scheduling challenges, communication limitations, and other obstacles that make it difficult for them to meet and interact in person (Aksamit, Leuenberger, & Morris, 1987; Brown & Foster, 1990).

PEER SUPPORT

Benefits from positive relationships with others exist for everyone, including people with disabilities. Many types of relationships are important to development - parents, siblings, grandparents, friends, and adult mentors all play key roles in people's lives. One approach to successfully integrating isolated students into academic environments is to help create informal peer support groups and friendships. Social support can ease the transition period following high school when a student's structured environment ends and many support systems are no longer in place (Burns, Armistead, & Keys, 1990; Ostrow, Paul, Dark, & Berhman, 1986, in Jacobi, 1991; Stainback, Stainback, & Wilkinson, 1992).

Peers can serve some of the same important functions generally associated with adult mentors. Peers can act as role models; offer friendship, advice and information; promote a sense of belonging; and empow er one another (Byers-Lang & McCall, 1993; Kram & Isabella, 1985; Stainback, Stainback, & Wilkinson, 1992 ). However, peer relatio nships tend to involve greater reciprocity and mutuality, encouraging each participant to be the giver as well as the receiver of su pport (Burns, Armistead & Keys, 1990; Kram & Isabella). Students can discover their potential to participate in academic opportunit ies and careers by interacting with others with similar interests and concerns.

Forming peer support groups can be problematic for students with disabilities. Specific challenges result because mainstreaming limits their interactions with other students with disabilities. They often experience rejection by their non-disabled peers, and barriers to social activities result from their disabilities (e.g., lack of the ability to speak, unavailable transportation, need for an interpreter or personal assistant, inaccessible buildings).

COMPUTER MEDIATED COMMUNICATION

Computer-mediated communication (CMC), where people use computers and networking technologies to communicate with one another, can connect people separated by time and space who might not otherwise meet. The removal of social cues and social distinctions like disability, race, and facial expression through text-only communication can make even shy people feel more confident about communicating with others. Youn g people can learn in ways that people learn best - through sharing information, questioning information, verbalizing opinions, weighing arguments, and active learning (Harasim, 1990). Although proximity is critical to developing peer and mentor support in most settings ( Stainback, Stainback, & Wilkinson, 1992 ), the Internet provides a medium that has the potential to build and sustain human relationships over great distances.

Adaptive technology makes it possible for anyone to participate in computer-mediated communication regardless of disability. For example, people who are blind can access computers using voice output and those with mobility impairments can use head sticks, voice input, alternative keyboards and other devices to overcome barriers imposed by a standard keyboard. In addition, people with hearing and speech impairments communication more fully electronically than in face-to face interactions (Burgstahler, 1993). The combination of adaptive technology and Internet communication can help overcome the geographic, temporal, and disability-related barriers to establishing peer support groups. There is some evidence that CMC can reduce social isolation and allow independent access to information resources (Burgstahler, Baker, & Cronheim, 1997; D'Sousa, 1991; Pemberton & Zenhausern, 1995; Stephenson, 1997).

THESE KIDS DO-IT!

The DO-IT project demonstrates the role that CMC can play in helping disabled students minimize social isolation and achieve academic and career goals. DO-IT (Disabilities, Opportunities, Internetworking, and Technology), winner of the President's Award for "embodying excellence in mentoring underrepresented students and encouraging their significant achievement in science, mathematics, and engineering," is directed by the University of Washington and primarily funded by the National Science Foundation. DO-IT works to increase the participation of students with disabilities in academic programs and careers in science, engineering, and mathematics (SEM). DO-IT Scholars, college-bound disable d high school students interested in SEM from throughout the country, meet face-to-face during short live-in summer study programs a t the University of Washington in Seattle. DO-IT Scholars then communicate year-round with each other and adult mentors and access information resources via the Internet. A wide range of disabilities is represented in the group, including mobility impairments, hearing impairments, visual impairments, health impairments, and specific learning disabilities.

EXPLORATORY STUDY OF PEER-TO-PEER CMC

An exploratory study, building on earlier work (Burgstahler, Baker, & Cronheim, 1997), was undertaken to examine the role that CMC can play in easing the social isolation and advancing the academic and career goals of students with disabilities. Research data came from seve ral sources. Seven thousand, seventy three electronic mail messages exchanged between 38 DO-IT Scholars during a two-year period were collected and coded according to the contents of the messages. Participation was voluntary. Private messages which participants elected not to copy to the research archive were not included in the study. In addition, Scholars documented their interests in survey questionnaires and focus groups and parents of Scholars recorded their impressions in survey questionnaires and letters.

RESULTS AND DISCUSSION

Most DO-IT Scholars report that they use Internet resources daily. They like computers for a number of reasons. Computers are engaging and fun. When combined with adaptive technology, computers help them overcome physical, communication, and cognitive challenges imposed by their disabilities. Computers facilitate access to people and resources. As one Scholar wrote, "It's easy, and fast and you can download things. I use it every day I can...I love to use the computer and everything on-line. If I had it taken away I think I would go cr azy."

One parent noted that her son was using the computer "anywhere from four to seven days a week," and another remarked that the single biggest benefit of the DO-IT program to her son was "constant computer use where there was minimal interest before."

Scholars most often use their Internet accounts to communicate via electronic mail. The table below summarizes the content of the electronic messages exchanged between Scholars. Each message was coded by content and according to whether a participant is seeking informatio n or providing information in a message. (Note that percentages add to more than 100% because some messages include content in more than one category. For example, this message, in response to two questions posed by another Scholar, was coded as providing both ac ademic information in SEM and personal information: "First question. I am taking health and, yes, I hate it with a passion. Oh we ll, have to have it to graduate. Second question. Yes we have a winter dance, and yes I am going. :)."

Peer-to-Peer Scholar Messages
7,073 messages from June, 1993, through May, 1995

Seeking Information Providing Information
Personal 26% 60%
Disanilities 2 9
DO-IT Activities 8 24
Technical/Internet 16 42
Academic, SEM 2 8
Academic, non-SEM 6 19
College Transition/Adaptation 3 8
Career/Work 1 7

Results summarized in the table suggest that Scholars tend to provide information more than seek information in their messages. Also, most messages include personal information and the largest topic area is related to technology and the Internet.

Many Scholars praise the unique capabilities of CMC, including its speed, efficiency, and low cost. One Scholar points out: "Email is easier than writing and quicker and I can do it on my own if I need t o and people ask questions about their disabilities so they can get extra help." Another says, "...email is a lot easier and it's u sually faster and more effective this way to communicate information back and forth to each other."

Scholars report that CMC overcomes communication barriers related to their disabilities. For example, one of a pair of quadriplegic students who good-humoredly characterize themselves as the "The Quad Squares" and who regularly communicate on the Internet confides, "It's kind of hard for two gimps to get together." A deaf Scholar notes, "I lik e electronic communication because I don't need an interpreter on the Internet or my TTY." With CMC, it is not uncommon for a student who cannot speak with his voice to become the most vocal in a conversation. One p articipant notes that he appreciates that this type of communication "kinda hides what type of disability you got."

On the other hand, some negative characteristics of electronic communication are reported by participants in the study. "Sometimes you get misinterpreted; you are not able to show expressions or emotions." And, it's "possibly not private."

MEETING SOCIAL NEEDS

Personal topics represent the highest content area coded in Scholar messages. Scholars both seek personal information from others and provide personal information about themselves. As one Scholar no ted, "It's just fun to talk with people and see how they are doing. I like sharing humorous things with them and telling about my l ife and hearing about theirs." Students often use electronic mail to get ideas and assistance from those in similar situations. St udents disclose information about their disabilities and seek solutions to barriers they're facing.

Scholars report making and maintaining friendships with other disabled youth as the most significant benefit of participating in DO-IT, saying, "I like the fact I have made many good friends with various disabilities." One poignantly expressed this insight: "Just meeting and interacting with others like me has given me the realization that I'm okay."

The ability to meet people across time and space is emphasized by many in comments such as, "I like the Internet so I could contact lots of people in other countries; You can meet people from all over the place, whereas you couldn't meet them if you didn't have a modem." and "On the Internet I have access to a whole world of people and information. This is an experience that I will appreciate for the rest of my life."

Scholars also use electronic mail to sustain relationships once they have been established. "You get to talk to people even though you don't see them that much and they're far away." One Scholar looks back on her life since joining the DO-IT community: "I have since made many friends world-wide. "I have a "family" via the net and have learned many things. I also have a whole group of unbiased people that I can com municate through a few strokes of a key. The DO-IT program has changed my life forever."

Messages about DO-IT activities document the value of social supports provided by non-Internet-related events sponsored by DO-IT. For example, one Scholar wrote to the group: "I've been thinking. It's been awhile since we've seen each other and we may not see each other until spring break. I personally miss hanging out with you guys. So, I was wondering, is there any way we can get together around Christmas and do something. I know this is rather short notice, but I don't think it would have to be anything complicated. Of course, I just m ay be complicated anyway. Anyway, if anyone has any thoughts on this, let 'em rip and maybe something interesting will happen."

Parents agree with Scholars when it comes to the value of social supports provided by peers. One parent points out that through DO-IT her deaf child "was afforded the opportunity to meet students from diff erent parts of the country who struggle with a disability." Another parent said, "This program has given her self-confidence, frien dships for a lifetime, and has opened the world of computers and the World Wide Web for her. Because of her profound hearing loss, [name's] world is silent. ...The students she met through this program have also become some of her best friends. I have never see n bonding like have watched [name] experience. I'm not sure why, but she became very close to her DO-IT family right away. Perhaps it's because all of these talented young people have experienced some sort of pain or misunderstanding because of their disabilities. Whatever the reason, they became very close friends quickly. [name] visits with friends clear across the country via the Internet and they help each other through difficult times. When she had her kidney transplant last summer, it was her friends from DO-IT who were the most constant and supportive."

One parent, who rated "The ability to communicate via the Internet and the ability to find a social connection at home" as the most noticeable benefits of the DO-IT project for her child, summarizes these sentiments, "...the high school years are years of learning about ourselves for everyone, and [adults and other students] don't make time for kids who are different...they are too busy with their own lives. DO-I T provides an outlet for kids who are 'different'." A parent of a student with a physical disability "observed [name] interacting with kids from all over the country. Each had unique physical challenges. I was pleased to see [name] become more social than I had ever seen him before. His confidence seemed to grow daily throughout the experience. He was l earning that he was not alone facing the world as a disabled youth."

Scholars use electronic mail to discuss the importance of friendships and how to make and keep them. One Scholar graduate, now in college, shared her insights with younger Scholars: "I think I've learned from being with people. I'm not so self-conscious or uncertain of myself . Friends have also reintroduced me to things like crayons and taught me card games and so on. Not only is it fun to hang out with people, but it's emotionally uplifting. Life wouldn't be as worthwhile without friends." Scholars share challenges in socializing and successful strategies they have discovered. As shared by one Scholar, now in college, " I think that blind people face the particular challenge of not being able to walk up to someone with whom they would like to talk un less they hear their voice, or the person introduces him- or herself. In the dining hall, for example, I always asked someone to he lp me find a seat, but that person would not necessarily know the people I liked to sit with, so it was a game of chance. Sometimes , I met new people, sometimes I happened to sit next to good friends, and sometimes I was unable to join in the conversations around me. However, by making friends in certain interest groups and arranging to meet friends for a meal, I was able to keep in touch wi th the people I cared about."

PROMOTING ACADEMIC SUCCESS

Scholars discuss academic issues related to science, mathematics and other academic areas, as well as college transition and adaptat ion. Many Scholars report that access to Internet resources provides a way for them to obtain information which was previously hard to get due to their disabilities. One explains, "...one advantage of electronic communication is that you can acquire more information at a time. You do not have to work so hard to write things down while someone is talking to you since I have all the information coming up on a scr een, I can go back and refer to it whenever I need to."

The importance of information access is documented by one high school Scholar in an essay that won runner up in a national contest sponsored by the National Center for Education Statistics, the NASA K-12 Internet project and the National Science Foundation. He said, "... I have been blind all my life, and have never known anything different. I have been mainstreamed in schools all my life, and have always had to depend on others to get me school materials. If I needed or wanted a book for class, it had to be transcribed into Braille or put on tape. H owever, in August of last year a whole new door was opened to me. I am a member of the DO-IT (Disabilities, Opportunities, Internet working and Technology) Program at the University of Washington ... Getting Internet access was the best thing that ever happened to me. In a way, my computer and access to the net has become my eyes to the world. I can read a newspaper, talk to people around th e world, and get materials for class papers, unlike before when I had to depend on others to get the resources I needed. Upon recei ving my access in August of 1993, I was able to read a newspaper for the first time in my life. This may sound trivial but to me it was a great accomplishment. I was not aware of the variety of topics covered by newspapers. I knew about the front page, feature articles, and sports section, for instance, but I did not know of the huge amount of stories in these sections. I was amazed. Befo re getting access I had to get sighted people to read me the paper. However, with the help of a screen reader and a host at the Uni versity of Washington called UWIN (University of Washington Information Navigator), I browsed through the paper, found just what I w anted to read, and read it. I can even mail myself the articles and save them; somewhat like how you cut articles that you like out of the paper to save for future reference. This was amazing to me. And not only can I read the Washington Post, but also the Mosco w News, and several other papers mainly used by scientists. So, the Net has helped me get in better contact with the world via onli ne newspapers."

The content of messages between Scholars indicates that these students are assisting each other through CMC in much the same way stu dents informally help each other at school. For example, an exchange between several blind students includes the message, "I have a dilemma. Did you take Chemistry, and if so, where did you guys get the periodic table? Second, did you take Trig? If so, how did you use a graphic calculator?" Scholars use each other as academic resources. One Scholar confesses, "I like to communicate with o ther people to get some information for my research." Others wrote, "I learn a lot from [other Scholars]. I learn about activities that are coming up and I learn more about different electronic resources." "I can communicate with others asking questions about a ll different issues," and "I like getting opinions from them."

ADVANCING CAREER GOALS

A relatively small number of Scholar messages include content related to careers. Perhaps, because they are still in high school and focused on college transition, specific career choices seem too far off. Perhaps, this is an area better discussed with adults who have more career experiences.

Scholars recognize that being able to effectively use computers and the Internet are valuable academic and career skills in themselves. Some are planning careers in computing and many point out that computing skills are helpful in advancing any academic or career goal. The in terest Scholars express in developing their computer-related skills is reflected by the large volume of messages between Scholars ab out "technical/Internet" matters (16% seeking and 43% providing technical/Internet information). A single question posted on a disc ussion list often elicits multiple replies.

Scholars inspire, tutor and act as role models for each other. They help each other gain career skills. For example, in a response to request from a Scholar for help with programming, another Scholar says , "I write programs in almost any language, but my favorite is called Visual Basic. I develop applications for anyone who wants them, but I al so like to write educational multi-media applications. If there's anything else I can do, just let me know." A blind Scholar summa rizes what he has gained from others: "By meeting new people, learning and using the Internet, talking through e-mail, and much more , I feel this program has made me more knowledgeable in more ways than I can say."

Some electronic communications support in-person events that advance career goals for Scholars and other students with disabilities. For example, after completing a summer internship at a scientific lab, a Scholar arranged a tour of the facility for local students with disabilities; all of the planning was done via the Internet.

Scholars' parents also report that using computers and the Internet are valuable in developing their children's job skills. The impact on future employment is voiced in this way by one parent of a child with a mobility impairment: "until your program came along, [name] lived such a limiting life. The rural area we live in has nothing to offer. Your program gave [name] a sense of independence and self confidence she so desperately needed. She is very active on the computer now, thanks to you. She learned so much about the Internet and even began a disabilitie s group. [name] didn't have much hope about a future, but now, she can see a future of some sort of employment using the computer."

SUMMARY

Computer-mediated communication can help ease the social isolation and advance the academic and career goals of students with disabilities by connecting them to a community of peers who support each other. CMC between peers helps young people with disabilities build computer and Internet skills; gain access to people and resources difficult to reach in other ways; connect to peers with information, skills and knowledge to share; and receive opportunities to act as role models and mentors to each other. CMC provides many of the same benefits as face-to -face friendships and support. The mutual exchange of personal information and the longevity often exceed those of other relationsh ips.

The CMC experiences of the DO-IT Scholars suggest that electronic peer support groups merit further study. Questions that could be pursued include:

How do peer-to-peer CMC benefits compare with those of face-to-face peer groups?

How do the benefits of peer-to-peer communication compare with mentor-to-protege communications on the Internet?

How do the benefits of CMC compare between students who have different types of disabilities?

Without a doubt, DO-IT Scholars gain life-long benefits from meeting each other on the 'Net. As beautifully stated by a participant who has moved on to college and now mentors younger Scholars,"...I made s ome best friends along the way who I still talk to and confide in even now. I learned how much we are all alike in the mind. Our d isabilities are only what most people see. As for what I learned about myself? I learned there are no boundaries. In today's worl d, a disability is no barrier. I saw so many people do so many different things. My friend [name] has cerebral palsy that affects her ability to walk, and move. Never have I seen such determination and love for life as I saw it in her. With the help of accommo dations, she is able to do anything a person without CP can do on the computer and in everyday life. Another friend of mine uses a head piece to operate the computer because he is paralyzed from the neck down. He too, blows me away with his sense of humor and str ength. I could go on and on but I think you get the idea. Looking at them, I am able to find within me what they have found within themselves. A quiet strength and love for life and myself."

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