Disability and Leisure Lifestyles
DISABILITY AND LEISURE LIFESTYLES
One's leisure lifestyle consists of the day-to-day leisure engagements that are an expression of leisure preferences, awareness, and attitudes (Peterson and Sumbo, 2000). The development of one's leisure lifestyle is influenced by a myriad of factors, including one's personality, social acquaintances, work responsibilities, educational attainment, and skills and abilities, to name a few. Of the 52.6 million Americans with some level of disability, the specific impairments that they live with may, in fact, impact their leisure lifestyles. For example, an adolescent whose life revolves around basketball and who recently had a spinal cord injury may begin to play wheelchair basketball. An older adult with dementia who has a lifelong passion for gardening may need prompting to go outside and begin working in her garden.
According to the Americans with Disability Act, disability is "a physical or mental impairment that substantially limits one or more of the major life activities" (see Table 1). Typically, in order to understand an individual's experiences in a major life sphere such as leisure, one must consider the interaction between the person and the environment (see Figure 1). The characteristics of the individual encompass his or her cognitive, physical, and mental capabilities, as well as leisure-related attitudes, dispositions, likes, and dislikes. The environment, which
|Definition of disability|
|The Americans with Disabilities Act defines disability using the following criteria:|
|(a)||a physical or mental impairment that substantially limits one or more of the major life activities|
|(b)||a record of such an impairment|
|(c)||being regarded as having such an impairment|
may support or inhibit one's leisure lifestyle, includes activity and program opportunities, physical space, and the cultural-social context. How do people with disabilities develop and maintain a meaningful leisure lifestyle? What types of activity opportunities and physical spaces support positive leisure experiences? How may acceptance and inclusiveness within the cultural-social context promote positive leisure involvement? These questions are addressed in the following paragraphs.
History of the Treatment of People with Disabilities
As described by Bullock and Mahon, historically the treatment of people with disabilities has been nothing short of inhumane. In ancient times, people with disabilities were considered defective, deformed, or crazy; and disability was viewed as some sort of supernatural punishment or curse. While people with less serious impairments probably survived relatively well as foragers or peasants, those with more pronounced disabilities were often used as for entertainment, if not otherwise killed. The movement to confine people with disabilities to institutions began in the twelfth and thirteenth centuries. These institutions, however, were not designed to provide care or treatment services to people with disabilities, but more simply "to get them out of circulation" (Bullock and Mahon, p. 22), to remove them from the eyes and minds of society. Colonial North America did not evolve much from this ancient approach and many early institutions were constructed. Overcrowded and prison-like, the oppressive conditions within these institutional warehouses, or asylums, as they were frequently called, continued well into the twentieth century.
According to Bullock and Mahon, "researchers have estimated that over 50,000 people with disabilities . . . were sterilized in the United States between 1925 and 1955" in efforts to prevent reproduction of those considered "manifestly unfit" (p. 25). Yet even the practice of sterilization paled in comparison to the tortures suffered by people with disabilities as Nazi Germany practiced their killing techniques and scientific experiments. Finally, the 1950s and 1960s saw an outcropping of advocacy for people with disabilities and institutional conditions gradually began to improve with the passing of some early federal regulations. In the 1960s and 1970s, a move toward deinstitutionalization occurred, and further federal legislation strengthened the rights of individuals with disabilities.
The Americans with Disabilities Act of 1990 has been called "one of the most important documents ever produced in the struggle for equity by people with disabilities" (Bullock and Mahon, p. 89). On 26 July 1990, President George Bush signed the Americans with Disabilities Act into law assuring the full civil rights of all people with disabilities in employment, public accommodation, transportation, state and local government services, and telecommunications. Many have referred to the Americans with Disabilities Act as "the 20th century emancipation proclamation for people with disabilities" (Bullock and Mahon, p. 83). This legislation is particularly germane to the topic of leisure lifestyle and disability as it not only prohibits discrimination, but also mandates the provision of reasonable accommodations in order to guarantee individuals full and equal participation in all state and local government services, as well as in virtually all privately owned businesses including hotels, restaurants, theaters, stores, stadiums, golf courses, theme parks, museums, libraries, and health clubs, to name a few.
Since the Americans with Disabilities Act was passed in 1990, municipal and county recreation agencies have made great strides in the movement to better accommodate, include, and involve people with disabilities in services and programs. Buildings and parks have been built or remodeled to be useable by all. Inclusive programs provide individuals with meaningful and enjoyable opportunities to build self-esteem, develop lifelong leisure skills, and make friendships. Swimming-pool lifts, sign-language interpreters, wheelchair-accessible trails, adaptive equipment, and specially trained support staff are just a few examples of how parks and recreation agencies are interpreting and implementing the guidelines of the Americans with Disabilities Act and contributing to the leisure lifestyles of individuals with disabilities in the United States.
Descriptions of Leisure Lifestyles of Select Groups
Individuals with Dementia: A Focus on Relationships and Rituals More Americans are living longer. Due to this phenomenon, often referred to as "the graying of America," the prevalence of dementing illnesses, such as Alzheimer's disease, will continue to increase by epidemic proportions. Dementia is often characterized by a progressive neurological decline and loss of function related to pathological changes in the brain. Beginning with cognitive impairment, dementia may eventually impact all domains of functioning, including physical, social, and affective.
Leisure involvement plays a central role in enhancing one's quality of life. According to Marshall and Hutchinson, participation in recreational activities can arrest mental decline, generate and maintain self-esteem, reestablish dignity, provide meaningful tasks, restore roles, and enable friendships. Such activities also have benefits for the nonpharmacological management of negative behaviors associated with dementia such as increased agitation, depression, or wandering. Therefore, an important role of professional and family caregivers is to assist individuals with dementia in the continuation of a personally meaningful leisure lifestyle.
Cognitive impairment need not preclude one's ability to lead a meaningful leisure lifestyle, because so many of the activities that give life meaning are simple in nature, such as visiting with family, enjoying a home-cooked meal with friends, playing fetch with an affectionate dog, attending afternoon picnics, sipping hot chocolate, and dancing cheek to cheek. These activities do not require sequencing, problem solving, concentration, abstract thought, or other abilities typically impaired by dementia. Instead, they require social relationships, intimacy, relaxation, and appreciation.
"When I was first diagnosed, she and I were just absolutely sure that everything was over, that life was just simply going to pot. It's difficult, I think, for somebody with Alzheimer's to not just give up and say, the hell with it. I periodically do that, but then again, there are some things that I really enjoy." (Cary Smith Henderson, a man with Alzheimer's disease; Henderson, p. 77)
The leisure lifestyles of people with dementia may also be supported through the design of familiar and engaging environments that provide opportunities and cueing for self-initiated activity, foster friendships and socialization, and promote a sense of belonging or attachment. One example of this approach to meaningful leisure might include the design of a kitchen environment within a care facility, reminiscent of a farmhouse kitchen or, perhaps, something with a 1950s motif. The kitchen could provide opportunities to hand-grind coffee beans, wash dishes, knead bread dough, or ream fresh oranges. In the cupboards, one might find all of the supplies necessary in order to make a simple lunch, or perhaps a few people would simply like to share a pot of tea at the kitchen table and look through sumptuously photographed cookbooks.
There is contentment in the simple, day-to-day rituals of life. Whether residing at home or within a care facility, individuals with dementia are depending upon caregivers to afford them the moments of joy that are available through the extraordinary richness of simple tasks.
Individuals with Spinal Cord Injuries (SCI): A Focus on Continuity and Adaptation Impairment in physical ability may have a profound effect on an individual's leisure lifestyle, obviously changing the way in which one engages in physical activities such as volleyball, hiking, and basketball. Physical disabilities may also limit recreation involvement in less obvious ways, as voiced by Lynn, who had a spinal cord injury:
"Like one thing that I really, really miss is being able to read a book, hold a book and read it, turn pages and . . . I've been trying to learn how to do it with a mouthstick, but it's not . . . I mean a little paperback novel is very difficult to, you know, to be turning it and reading it with a mouthstick. Uh, I don't know really what I'm going to end up doing." (Kleiber, Brock, Lee, Dattilo, and Caldwell, p. 292)
Given that an SCI is an acquired disability, individuals move from a leisure lifestyle that is created based on being able-bodied to a leisure lifestyle that must accommodate changes in physical functioning. The importance of a person's lifelong leisure pursuits to his or her self-identify emerges from the voices of adults with SCI who seek continuity in their leisure and are willing to modify participation to do so. For example, Brian stated:
"I've got to be still trying to do things that I used to do but in a different way. To be a painter, artist, I've got to find a new way to either paint with my mouth . . . but I know I'm going to do something. Be able to go on. I'm not giving up, not going to quit." (Lee, Dattilo, Kleiber, and Caldwell, p. 218)
People with spinal cord injuries also experience changes in the social relationships that are central to many leisure pursuits. As discussed by Kleiber, Brock, Lee, and Dattilo (1995), an individual's lack of ability to help physically organize the food table during a family picnic, to throw a ball for a child, or to play with one's dog are all factors that shift a person's conception of leisure lifestyle as he or she deals with the adjustment to a life with an SCI.
Engagement in normative day-to-day recreation activities, such as wandering in and out of downtown stores, eating in a restaurant, and dancing to music, support the expectation that one can maintain his or her leisure lifestyle following an SCI. Many individuals, however, are challenged by this expectation as they return to the community following intensive in-patient rehabilitation. In order to address this challenge, there are a growing number of in-home programs designed to support the individual's transition to community life. Home-based programs, such as the one implemented by Loy, Broach, Kind, and Hufstetler, may involve a recreation specialist working with the individual to assess leisure needs and provide instruction on adapted leisure skills, adaptive equipment, or support for accessing community resources. Home-based programs may also pair a person who has just returned to the community with a peer who can assist with the challenges inherent in adjusting to a SCI and seeking continuity in his or her leisure lifestyle. Sable and Gravink (2002) have utilized peers to provide support and information on ways to negotiate changes in areas such as social relationships, sexuality, leisure skills, and self-advocacy.
Community-Dwelling Individuals with Disabilities: A Focus on Inclusion
"Paul has perfect rhythm. No, he's not good at learning the actual steps but he has perfect rhythm and he is a perfect gentleman. And he is very well liked at that noon-hour country line dancing. And he went to another country line dancing class for disabled and didn't like it. . . . So that was toasted. That didn't happen. But we went to the Corral three weeks ago and did country line dancing. It was hilarious. It was fun." (Martha, a support worker to Paul; Pedlar, Haworth, Hutchinson, Taylor, and Dunn, p. 113)
Since the early 1970s, and particularly since the enactment of the Americans with Disabilities Act, increased attention has been paid to how communities afford individuals with disabilities engagement in community life. Recreation inclusion is the process by which communities empower individuals with disabilities to engage in
|Inclusive recreation opportunities|
|SOURCE: Adapted from McGovern, 1996|
|Daniel , a young adult with a spinal cord injury, wants to go hiking in the local park with his dog. An accessible hiking trail will allow him to do so.|
|Sarah , a six-year-old with learning disabilities and attention deficit disorder, would like to attend the adventure camp sponsored by the local recreation center. An extra staff member or individualized behavior plan will allow her to do so.|
|Kenny , an eight-year-old boy who is deaf, is excited about participating in the local soccer league. A sign language interpreter will allow him to do so.|
social relationships, leisure activities, and community roles that are based on their interests and aspirations. As described in Table 2, inclusion may target physical space to ensure accessibility, such as designing accessible hiking trails or installing a lift in the community center swimming pool. Inclusion may also be a result of staff support that affords an individual's full access and participation in desired activity opportunities.
Community agencies, such as school districts and leisure service agencies, may provide specialized programs that support an individual's movement towards participation in inclusive recreation. For example, Johnson, Bullock, and Ashton-Schaeffer had individuals with disabilities work with a recreation specialist to identify their leisure goals, examine options, and make decisions, as well as initiate participation in the selected inclusive recreation opportunity. Less-formalized support for involvement in activities such as lifting weights or swimming laps may come from workout buddies who are nondisabled peers. In a program run by Galambos, Lee, Rahn, and Willis, workout buddies assisted the individuals with disabilities when needed (for example, getting in and out of the pool), and both parties encouraged the other's exercise routine.
The financial impact of inclusive recreation opportunities is of growing concern. Several public recreation agencies in the Chicago area are spending more than $1 million annually on inclusive services (McGovern, 2002). Questions remain as to how communities will be able to continue to meet the growing demand for activity opportunities and physical spaces that afford people participation in the most integrated settings possible. As the demand and resulting expense of inclusion increases, communities may be forced to seek additional funding sources or face the elimination of general recreation programs for constituents with and without disabilities.
Summary and Conclusion
A satisfying leisure lifestyle has the potential to create meaning and social connectedness in the lives of individuals with disabilities. Since the enactment of the Americans with Disabilities Act, there has been an increase in the demand for and delivery of inclusive activity opportunities, as well as in-home programs. Since the early 1990s there has also been increased emphasis placed on the design of physical environments that foster engagement in satisfying and enriching leisure activities. All of these efforts have enhanced the leisure experiences of individuals with disabilities. Continued efforts are needed to ensure that leisure-service providers are able to design effectively activity opportunities, physical space, and social environments that support the leisure lifestyles of individuals with disabilities.
See also: Adapted Leisure Formats
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Henderson, Cary Smith. Partial View: An Alzheimer's Journal. Dallas, Tex.: Southern Methodist University Press, 1998.
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McGovern, John. "The ADA Is a Tremendous . . . Opportunity!" Parks and Recreation 31 (1996): 34.
——. "Special Circumstances: Is the SRA Boom of the '70s and '80s Headed for a Bust?" Illinois Parks and Recreation (2002): 30–35.
Marshall, Melody, and Sally Hutchinson. "A Critique of Research on the Use of Activities with Persons with Alzheimer's Disease: A Systematic Literature Review." Journal of Advanced Nursing 35 (2001): 488–496.
Pedlar, Alison, Larry Haworth, Peggy Hutchinson, Andrew Taylor, and Peter Dunn. A Textured Life: Empowerment and Adults with Developmental Disabilities. Ontario, Canada: Wilfrid Laurier University Press, 1999.
Sable, Janet, and Jill Gravink. "In-Home Therapeutic Recreation for People with Recent Spinal Cord Injury." In In-Home Therapeutic Recreation: Successful Strategies and Services. Edited by Barbara Wilhite, M. Jean Keller, and Linda Epps. Ashburn, Va.: National Therapeutic Recreation Society, 2002.
Stumbo, Norma, and Carol Peterson. Therapeutic Recreation Program Design: Principles and Procedures. San Francisco: Benjamin/Cummings, 2004.
U.S. Census Bureau. "Americans with Disabilities: Household Economic Studies." Series P70-73, 2001.
Judith E. Voelkl and Jennifer D. Carson