Participation is more than simply engaging in a life activity. It is an important aspect of social involvement that influences self-esteem, identity and well-being.
Charles Christiansen; Sep. 29, 2015
Years ago, I was motivated by the desire to make the world a better place by helping others. As a young occupational therapist, I focused mostly on the goal of helping people with disabilities become independent. Yet, in doing so, I failed to appreciate that humans thrive in groups, that most life activities have a social purpose (and take place in a social context), and that life tasks—whether they involve getting dressed, dining out, attending a football game, or doing paid work—involve others directly or indirectly. Like many of my colleagues, I failed to appreciate that, as humans, we are interdependent, and that communities and societies are large groups of people organized (however loosely) that provide an important collective benefit to each individual member.
It was not until years later that I began to appreciate the significance of the termparticipation—a word that had not yet become part of the language used to discuss disability and health care services. In fact, it is likely that most people today don’t recognize that participation is an important and relevant goal for measuring outcomes in health care. This is unfortunate, given the multiple reasons why participation is an important factor in contributing to quality of life.
So my intention here is to highlight the importance of participation, to connect it with everyday living, and to share my perspectives on how it influences quality of life. Hopefully, these observations will contribute to an improved understanding of why participation is an important goal (and measure) for health care and support services.
What is participation?
One common definition of participation is “taking part in something.” But this definition, like an iceberg, leaves a great deal of important information beneath the surface. Full participation means being included and accepted as a part of a larger social group and might be defined better as “sharing experiences with others.”
Those familiar with the World Health Organization and the development of the current (2001) framework for understanding and classifying disability and human function—theInternational Classification of Functioning, Disability and Health (ICF)—know that use of the term “participation” in that document represented an important development. That change influenced policy and research on a global level.
By including participation (defined as involvement in a life situation), the document acknowledged that disability could only be fully understood in terms of its impact on everyday life. The larger framework of the ICF portrayed disability as a consequence of how functional limitations of the body combine with environmental features (and personal characteristics) to enable or interfere with meeting a person’s task requirements for everyday life.
In doing so, it implicitly recognized that people are different, have abilities that vary for reasons other than health, and that the characteristics and designs of environments (which include other people, objects and places) are key elements in determining how people are able to function in their daily lives.
It tacitly acknowledges that a young girl born without a limb or a grandfather whose gait is unsteady could live their lives fully despite physical limitations if only environments were designed in ways that didn’t assume that everyone was able to climb the steps into a building or school.
But environments can have non-physical barriers too.
The world “out there” includes other people with their beliefs and understandings, and these can sometimes result in policy and attitudinal barriers that contribute to disability and restrict participation. This is why I concluded that the definition of participation included in ICF was inadequate and incomplete, and would be difficult to measure. I surmised that participation needed to be defined and interpreted in a more complete way to acknowledge its subjective features and to capture its profound social implications when viewed from the standpoint of group membership and acceptance.
My general thesis was that life is inherently a social activity and that people flourish when they have others who love, respect and support them.
An abundant and growing body of research supports this. It shows that being included in groups communicates acceptance, approval and respect, while also offering opportunities to meet the basic needs that are necessary for health and well-being. This is why participation is more completely defined when it conveys the idea of a shared experience with other people.
Why are groups so important?
It is generally accepted that as a species, humans evolved as group-living animals who avoided extinction because they learned to work together to ensure their mutual safety and survival. Group living seems to be part of human DNA, with evidence emerging that genes influence social tendencies. Ethologists, the scientists who study animal behavior, use terms such as cooperation and altruism to discuss these characteristics. It is thus widely accepted that as social animals, we are genetically “wired” to seek inclusion, social acceptance and approval from others.
My work as a social scientist over the years has focused on the things people do and the experiences they have that keeps them physically and emotionally healthy. Hundreds of scientists doing research across many disciplines have contributed to a convergence of ideas for which there is convincing support. These findings show clearly that group membership and shared participation influences health and well-being and enables people to create and express their individuality and personal identity.
As an occupational therapist and social scientist, I know that although participation may suggest active physical involvement to some, its primary value derives from the social and psychological benefits it confers, which are not dependent on physical capabilities and may not be readily observed.
For example, choice and control are two closely related behavioral dimensions that seem essential for maintaining a healthy personal identity. Yet, neither of these requires physical ability. The famous physicist Stephen Hawking has demonstrated how a person with very limited physical ability can fashion a global identity despite the physical restrictions of ALS that have impaired his ability to move and speak.
Early accommodations for wheelchair users in public spaces often included designated locations that worked to separate and isolate persons with disabilities from others in the group. For example, some performance venues and baseball parks offered “wheelchair” seating, which was separated from seating areas for others. Such architectural designs, however well intended, reflected a lack of appreciation that, for most people, being there is meaningful only if it involves being with others. In addition, most people loathe being identified in public settings based on differences in appearance or ability.
Personal Identity and Groups
Identity is an important dimension of participation. When, as an adolescent, I joined my friends for “pick up” baseball or football games, I interpreted that being part of the team demonstrated acceptance and my value to others. Throughout our lives, we all are striving to fashion a personal identity that is acceptable to others and ourselves.
When one is part of a group, one shares an identity with others, whether as sports enthusiast, coin collector or family member. This shared identity provides an important form of social nourishment by contributing to our self-esteem and affirming that we are respected and accepted by the group.
A colleague who studied the adaptations of a client with disabilities (“Megan”) provided a great illustration of the social importance of having a respected identity. Megan, a middle-aged woman with severe cerebral palsy, was able to develop ingenious strategies to live “independently” in the community. A striking (but predictable) finding from this case study was how much effort and attention was given by the woman to manage her social interactions in ways that communicated to others that she was capable and competent.
In some cases Megan rejected assistive technology to avoid being labeled as disabled and the stigma she feared it would bring from others in her community. She would send carefully written notes in advance of her banking and shopping errands so that those she met with would already have an impression of her as competent and capable. She feared her involuntary movements and difficult speech might lead others to conclude that she was incompetent.
Megan’s actions become highly understandable when considered in light of the importance people attach to social acceptance and inclusion. But they also underscore her need to maintain an acceptable social identity, which to her included having the choices and making the decisions that were fundamental to demonstrating her self-determination.
Participation and Social Capital
It is important to note that when older adults and persons with disabilities are able to live independently in communities, the benefits of doing so extend well beyond demonstrating self-reliance and maintaining an identity as a competent person. It also provides access to the important benefits that come from community participation.
Robert Putnam and others use the term social capital to describe the collective goodwill and sense of community that results in neighborhoods where members are active and involved and levels of volunteerism are high. When communities are functioning with high levels of social capital, good things result that benefit everyone. Communities with high levels of civic participation tend to have less crime and social decay than communities without such characteristics. Moreover, evidence also suggests that where social capital is higher, levels of health and life expectancy are higher as well.
In short, where community participation is high, good things result. This is no less true for older adults and persons with disabilities.
The Grand Insight of We
In this discussion, I have attempted to convey the importance of participation to health and well-being, and to support arguments for a more complete definition and use of the term as a way of viewing disability and enablement. I have emphasized that participation involves doing something as part of a group.
Participation is more than simply engaging in a life activity. It is an important aspect of social involvement that influences self-esteem, identity and well-being.
Charles Christiansen is founder and principal of StoryCrafting, LLC, a consulting group specializing in helping people and groups manage transitions. He was formerly CEO of the American Occupational Therapy Foundation and prior to that held academic leadership positions at The University of Minnesota, The University of Texas Medical Branch, and The University of British Columbia. He resides with his wife, Beth Jones (a biochemist), in Rochester, Minnesota.