Re-thinking Leisure Services for Deaf and Hard of Hearing Persons: A New Paradigm.

Inclusion is the wave of the future. How can we include persons who are deaf and hard of hearing in the least restrictive environment? Communication barriers present unique and special problems that require innovative methods, as well as an understanding of the deaf culture, to solve.

When you go to the health club, he might be on the next treadmill reading a book or watching TV. He might stand out as the only one not using a personal CD player. When you are at the community center, she might be sitting next to you watching her child play basketball with yours. At your favorite restaurant, he might be washing the dishes or sitting at a table near you eating that sandwich that looks so delicious. As you walk past the craft booths at the annual town festival, she might be the person who seems to be taking a bit longer to purchase her ceramic mug. In line in front of you at the neighborhood toy store, she ignores your comment that you both picked out the same new game for the grandkids.

Sound as though we are talking about everybody? Persons who have varying degrees of hearing loss comprise the largest disability group in the United States. Ten percent of the population reports a significant bilateral loss (which means the loss affects speech comprehension). So, for every ten persons with whom you come in contact daily, one may have a hearing loss great enough to make it difficult for him or her to comprehend spoken words in conversation. It could be a bystander, a waitress, a friend, a co-worker, or even a family member.

What does this mean for the recreation professional? It means that 10 percent of the population has difficulty participating in life in the same way the other 90 percent do. In one of the scenarios described above, you probably wouldn't immediately notice that the person has a hearing loss. He or she might have taken pains to conceal a hearing aid or cochlear implant processor (these are worn outside the body--a fact few people realize). On the other hand, he or she might have speech or voice quality that makes you wonder what is wrong. If he or she is with another person who uses sign language, that will be a dead giveaway; however, an obvious but frequently unconsidered fact about sign language is that you will not see it unless there are at least two people present who know that language and who are aware of each other's presence. In other words, the person in front of you could be deaf and fluent in sign language, but you wouldn't know it. As the baby boomers age, the percentage of hard of hearing persons will grow dramatically because people tend to experience hearing loss as a part of the aging process. Therefore, twenty years from now, that 10 percent could easily double.

Since 1975 when President Ford signed the Education for the Handicapped Act (PL 94-142), the subject of integration/least restrictive environment has been an issue. Recreation has often followed the lead of education, especially as it applies to persons with special needs. "Recreation, including therapeutic recreation" was included as a related service in PL 94-142.

With the passage of Section 504 of the 1973 Rehabilitation Act and the subsequent passage of the Americans with Disabilities Act (ADA) in 1990, the prevalence of inclusion as a programmatic response has become even more prominent. It is clear from the language in the ADA that services offered to persons who do not have disabilities must be available to individuals with disabilities. However, neither the ADA nor the Individuals with Disabilities Education Act (IDEA) mandates that inclusion be the sole programmatic thrust for recreation agencies. Both statutes suggest that services be provided in the most integrated setting possible. As McGovern (1991) noted, "Programs, services, and activities of a park and recreation department must be available, without discrimination, to an individual with a disability who meets `essential eligibility requirements' for that program" (p. 3). The recreation profession has correctly understood that to mean "... in the most integrated setting possible." However, there are times when the "most integrated" setting that supports optimal functioning may, in fact, be a separate program. The original question posed earlier would now become, "how do we know if a setting supports optimal functioning?"

During the mid- and late-1990s, the issue of inclusion has been hotly debated within the recreation profession--not unlike the issue of "mainstreaming" and "integration" in the 1970s and 1980s. The debate about inclusion, as it was with mainstreaming and integration, has been fraught with emotion on all sides. Parents, whose children with disabilities had been functioning well in separate, nonintegrated programs for years, suddenly found those programs being eliminated in the name of "inclusion." Other parents whose children had not been "allowed" to participate with their nondisabled peers lobbied national, state, and local agencies for the opportunity for their children to be "included." Adults with disabilities who had always recreated with their cohorts in separate programs found these programs sometimes were no longer available. And, adults who had always wanted the opportunity to recreate with their nondisabled peers finally had the opportunity to do so. As Bullock and Mahon (1997) pointed out, inclusion is not about conforming to some norm, but rather a way in which differences can be accepted and valued, and persons with disabilities can become an integral part of their communities.

In the midst of this debate, the National Therapeutic Recreation Society developed a "Position Statement on Inclusion" in 1997, which was adopted as a National Recreation and Park Association policy in October 1999. Embedded within this position statement are the tenets of 1) right to leisure; 2) quality of life; 3) support, assistance, and accommodations; and 4) barrier removal. Although the purpose of the statement is "... to encourage all providers of park, recreation, and leisure services to provide opportunities in settings where people of all abilities can recreate and interact together," it also recognizes and supports the concept of "the right to choose" (i.e., individuals must have the opportunity to exercise choice in determining recreation activity participation), an idea inherent to the recreation concept.

Recreation and Deaf and Hard of Hearing Persons

When dealing with programming for deaf and hard of hearing adults, how do we know if our programs are really serving those with unique language and communication needs? Was input from this group sought and obtained when mainstreaming and inclusion mandates changed the face of recreational opportunities for special populations?

Wachter (1994) explored the relationship between mode of communication preference and frequency and type of leisure participation, leisure partner preference, and leisure satisfaction. She stated that, "Given the significance of social interaction in leisure and the potentially limited opportunities and impaired quality of social involvement for individuals who are deaf, questions remain regarding the extent to which the mode of communication contributes to or inhibits leisure involvement and satisfaction with leisure" (p. 214). Although Wachter's results cannot necessarily be applied to each and every person who is deaf, there are some important considerations. She suggested that "... the communication preferences and leisure participation patterns of individuals who are deaf differ with the type of communication they use" (p. 281).

In 1996, researcher T. Halcomb compared the extracurricular involvement of mainstreamed deaf and hard of hearing high school youth with that of comparable subjects who attended residential schools for the deaf and found the following:

1. Deaf and hard of hearing students in residential schools had a much higher rate of extracurricular participation than both deaf and hard of hearing students in mainstream schools.

2. Deaf and hard of hearing mainstreamed students participated almost exclusively in sports, were rarely involved in any other kind of extracurricular activities, and never assumed leadership roles.

3. Only 20 percent of the mainstreamed students made positive remarks about their extracurricular involvement, and the large majority of comments referred to lonely, constrained, frustrated, and otherwise unsatisfactory experiences.

As adults in the workplace, deaf persons find themselves lacking in their abilities to contribute in formal (meetings, conferences) and informal (lunchroom, water cooler, and locker room) settings, which can perpetuate the seclusion of the deaf community. This naturally makes them desirous of recreational involvement in settings where they are able to converse with numerous people in a comfortable mode (Foster, 1997).

From Personal Experience

One of the authors of this article had a moderate hearing loss through elementary school, which progressed to a severe loss by the time she was in high school. This etiology combined with apparent intact hearing during the preschool years resulted in her being classified as "hard of hearing." Although she had excellent verbal skills and was able to "hear" her teachers with the assistance of lip-reading throughout elementary school, she was unable to "hear" her peers from kindergarten through high school. (Hard of hearing children generally need a quiet background in order to "hear" a teacher, and there is never "quiet" when elementary school children are interacting with each other.)

But because this woman has achieved academically, has a good speaking voice, has attended mainstream fitness and recreation conferences, has made numerous presentations, and has received prestigious awards, many proponents of inclusion have remarked that her life "proves" that inclusion is best. However, she would correct them by saying that her life proves that even if "inclusion" is achieved at the functional level, inclusion at the social level does not necessarily follow.

When she received a prestigious national fitness award to be presented at a ceremony held 500 miles from her home, she invited local deaf leaders she had never met to join her so that she would not have to be the only deaf person at the award ceremony. Even though she had been inducted into a "hall of fame of fitness" and was now a member of a select group of peers who had made contributions of national significance, she chose to socialize with others who use sign language rather than sit with her new colleagues using an interpreter. She acknowledges that it was a difficult decision to make, but it goes to show that a sense of belonging is just as important as a sense of accomplishment.

Implications for the Recreation Profession

So, what are the implications for the recreation profession? Simply this: Most people with a significant hearing loss won't choose to "include" themselves in activities where conversation is an important element unless they know that there will be others who use the same communication mode as they and with whom they can communicate easily. A person with a hearing loss could be eager to take an art class but might shy away from doing so because he or she won't be able to participate in the small talk. We can provide assistive listening devices and interpreters, which help with access to a main speaker at an event; however, they do not remove the barrier to meaningful, and often taken-for-granted, casual conversation. People don't take classes or join recreation activities just to learn the thing being taught--they join to meet others who share similar interests with whom they can socialize.

So, Where Do We Go from Here?

Clearly there is a need for both investigation and programming. Because available data lead us to assume that the deaf and hard of hearing population in many localities is greatly underserved by parks and recreation, we first ought to test this assumption to see if it is correct. This is a ready-made project for collaboration among practitioners, educators, and consumers. Wachter's (1994) research provides a good starting model and could be replicated in a number of cities to yield a broader base of information and determine if the patterns are repeated.

It is imperative that recreation professionals undertaking such research enlist members of the target group as co-researchers, since they possess a unique perspective of the issues that affect them. Thus, the questions they may devise are worthy of strong consideration. From the authors' perspective, an important first step would be to determine how often, if at all, deaf or hard of hearing persons have taken advantage of public and/or private recreation opportunities. This percentage can be compared with the expected general population participation frequency. If 10 percent of the population has a significant hearing impairment, it would seem logical that 10 percent of program participants would have a hearing impairment.

Program providers could also take a case-study approach if they find that there are "repeat participants" who are deaf or hard of hearing. How do such persons explain their participation? Are they simply motivated so much by the leisure activity itself that communication with fellow participants is decidedly secondary? Are they just minimally hard of hearing and/or do they have some exceptional lip-reading ability or exceptional willingness to pursue communication in whatever manner works for them?

Another scenario for a case study might be when a deaf or hard of hearing person requested an interpreter or assistive device for a single activity or class and then "never called again." For these and other case-study ideas, registration records may yield names of people who at one time or another participated in programs.

In addition to gathering information about past and existing participation, nonparticipation, and constraints to participation, recreation professionals should be encouraged to design programs with input from local deaf and hard of hearing persons. Such programming, designed in cooperation with the target group themselves, can create additional data that will guide the profession toward successful integration.

Recreation professionals have many resources available at their fingertips. All 50 states are affiliated with the National Association of the Deaf. Most states also have local chapters of Gallaudet University and/or the National Technical Institute of the Deaf Alumni(ae) Associations. The national organization, Self-Help for hard of hearing People, has many local chapters as well. Many major cities have community service centers for deaf and hard of hearing persons, and most states have some kind of statewide commission, as well as a state school for the deaf. Many colleges and universities offer classes in American Sign Language (ASL). All these resources provide employment and/or volunteer opportunities for deaf and hard of hearing persons, and they are excellent places to recruit planning and research partners. The most comprehensive listing of these resources is prepared annually by the American Annals of the Deaf. The American Sign Language Teachers Association maintains a listing of colleges and universities offering ASL classes with qualified instructors.

A great way to modify a program or initiate a new one so that deaf and hard of hearing persons are offered a choice is to form an advisory committee that consists of the members of the deaf community. Some guidelines to help form this committee are as follows:

1. Contact consumers and invite them to a meeting. Many deaf and hard of hearing persons are frequent users of e-mail, so if e-mail addresses are available, this is an excellent way to reach them. Make the meeting as accommodating as possible for both sign language users and nonusers.

2. Make sure there is ample time to get acquainted at the start of the meeting. Sharing background information, such as schooling, employment, and community involvement, is very important in the deaf culture.

3. Reiterate and expand upon the purpose of the meeting, and invite attendees to share information about their experiences with leisure resources in your community. Make it personal and down to earth. These potential advisory committee members are your peers, and you are asking them to help you do your job better.

4. Ask attendees to look through your existing program offerings and answer the following questions (plus any others that you devise): Do they know a deaf or hard of hearing person who could lead, facilitate, instruct, and/or assist with any of the current offerings? Do they know someone who could teach a drawing class, conduct a soccer clinic, or set up a booth of crafts at the annual festival? You might go item by item and ask them to really think of anyone -who is either skilled or interested in the activities listed. You might say to yourself, "how tedious"; however, it's necessary because you are asking them to think about things and imagine possibilities they have probably never considered. The idea of a deaf artist teaching a class for both deaf and hearing participants or a winning soccer coach from the residential deaf school holding a clinic for local elementary school children are foreign concepts to many people--both deaf and hearing. You will probably need to repeatedly encourage your advisory council members to become "possibility thinkers."

Assume all goes well, and you succeed in marketing a few programs especially to deaf and/or hard of hearing persons. Your next step is to perform a comprehensive evaluation of the program. Ask questions related to the social experience, such as whether they enjoyed having both hearing and deaf persons present, or if they preferred having only deaf people present (as the case may have been). Let your advisory council help to create the questions, use this feedback as you continue to refine the program, and publish it so that others may learn from your experience.

Adults who are deaf or hard of hearing are not the only ones who need community recreation programming. Many mainstream educational programs in local schools have only a few deaf and hard of hearing children and youth, but these youngsters can benefit, grow, and become empowered from associating with others like themselves.

How do we do this? Use the same core advisory council and add parents, the children themselves, and school personnel to develop a solid program. Bring together the few deaf and hard of hearing youth from several local schools, as well as deaf and hard of hearing adult staff and volunteers to work in the programs. Provide high quality activities. Be willing to provide transportation. Support local and national efforts to have American Sign Language offered for language credit at both the middle school and high school levels: The more hearing youth who can sign, the more you can expect to successfully market programs designed for deaf and hard of hearing youth that will be attractive to their hearing peers. Teach the kids the value of meeting other deaf and hard of hearing kids. They may have picked up the subtle message that "it's better to hang out with hearing" and thus unconsciously devalue themselves and others like them.

Making a Positive Choice

For persons who are deaf and hard of hearing, the concepts of right to leisure, quality of life, and barrier removal involve much more that just removing the barriers between leader and follower, providing a TTY, or employing a person who signs at the community center. Instead of merely concentrating on making the facility and programs physically accessible so that deaf or hard of hearing participants can recreate alongside their hearing counterparts, the recreation professional might want to also consider expending more energy in the area of social accessibility, that is, encouraging, validating, and promoting recreation participation with others who share the same communication method.

Inclusion is not negative--it's far from it. Inclusion is a wonderful concept, and if practiced and promoted as it was intended, it has the potential to change attitudes and behaviors and break down physical and social barriers. But some people prefer to be with other people who are like them, especially during their recreation activities. If one has to "work" to recreate, then is it recreation? We are suggesting nothing different than this: Individuals and groups must be able to make choices about their activities--especially during their recreation experience. Recreation should never occur at the expense of individual choice, self-determination, and autonomy. If recreation professionals offer ONLY inclusion services and programs, then there is no choice. If recreation professionals offer ONLY separate services and programs, then there is no choice. If there is no choice, then there can be no self-determination or autonomy, and that is, after all, the desired outcome.

References

Bullock, C. & Mahon, M. (1997). Introduction to recreation services for people with disabilities. Champaign, IL: Sagamore Publications.

Foster, S. (1996). Communication experiences of deaf people: An ethnographic account. In I. Parasnis (Ed.), Cultural and language diversity and the deaf experience. Great Britain: Cambridge University Press.

Holcomb, T. (1996). Social assimilation of deaf high school students: The role of the school environment. In I. Parasnis (Ed.), Cultural and language diversity and the deaf experience. Great Britain: Cambridge University Press.

McGovern, J. (1991). Justice department publishes final rules implementing the Americans with Disabilities Act. Recreation ... Access in the 90s, I (4), 3.

National Therapeutic Recreation Society. (1997). Position statement on inclusion. Ashburn, VA: NTRS/NRPA.

Wachter, C. (1994). The influence of communication mode on the leisure behavior of adults who are deaf. Therapeutic Recreation Journal XVIII, (4), 213-220.

Dr. Anne L. Simonsen, CTRS, CLP, is a professor and coordinator of the recreation and leisure studies under-graduate program in the Department of Physical Education and Recreation at Gallaudet University. Prior to her career in the university setting, she directed the Special Populations Division of the Maryland-National Capitol Park and Planning Commission in Prince George's County, Maryland. Dr. Simonsen has served as the president of the National Therapeutic Recreation Society and currently represents NTRS on the NRPA Board of Trustees. She has been active in the Maryland Recreation and Park Association, serving as the vice president of MRPA and the chair of its therapeutic recreation section. Dr. Simonsen holds a B.A. in English literature from the University of Iowa, an M.A. in education with a specialty in therapeutic recreation from George Washington University, and a Ph.D. in therapeutic recreation from the University of Maryland.

Dr. Gina A. Oliva is an associate professor in the Department of Physical Education and Recreation at Gallaudet University and has been involved in developing, organizing, and evaluating an extensive variety of recreation and leisure programs and activities during her professional career, which spans almost 30 years at Gallaudet University. She earned her B.A. in psychology from Washington College, her M.A. in counseling from Gallaudet University, and her Ph.D. in recreation and leisure studies with an emphasis in program and administration from the University of Maryland.

Born into a hearing family, Dr. Oliva has had a hearing loss since age 4. She came into the "deaf world" at age 20. She has been a leader in providing health club, community center, and national Elderhostel program accessibility, as well as translating music performances into American Sign Language and leading book discussion groups for the deaf community. Most notably, she developed a system of visual cueing for aerobic exercise classes, training instructors in and publishing booklets, articles, and videotapes about this technique.

These two authors team up to provide an informative, easy-to-understand article about when integrating deaf and hearing individuals is the best form of inclusion and when separation may be the better option in "Rethinking Leisure Services for Deaf and Hard of Hearing Persons."