In the foreword to the World Report on Disability (World Health Organization [WHO], 2011), Professor Stephen Hawking states:
It is my hope that, beginning with the Convention on the Rights of Persons with Disabilities and now with the publication of the World Report on Disability, this century will mark a turning point for inclusion of people with disability in the lives of their societies (p. 3).
Now, as 2017 begins, although some progress has been made in making societies more inclusive for individuals with aphasia, much more needs to be done. People with aphasia continue to face barriers in their everyday lives that make it difficult for them to participate fully in their communities. Negative environmental factors (i.e., barriers), such as inaccessible written information, continue to hinder their full participation. Positive environmental factors (i.e., facilitators), such as sustainable communication partner training for key service providers, still need to be implemented in many settings. This issue of Topics in Language Disorders focuses on recent developments in removing barriers and implementing facilitators to support the inclusion of adults with aphasia in their communities. It includes articles from Australia, Canada, England, and the United States that focus on environmental factors at both the individual and societal levels.
The first two articles (Menger, Morris, & Salis, 2017; Sather, Howe, Nelson, & Lagerwey, 2017) highlight environmental factors at the individual level. In the first article, Menger et al. (2017) present the case of a 74-year-old man who was retired from academia and had severe aphasia. The authors use the WHO's International Classification of Functioning, Disability, and Health ([ICF]; WHO, 2001) to develop a detailed profile of the man's Internet use. The profile includes the identification of environmental factors related to the man's computer, the online environment, and other people in his life. The article illustrates how clinicians can use the ICF to obtain a holistic view of a client's Internet use as a first step in helping an individual overcome digital exclusion.
In the second article, Sather et al. (2017) also address environmental factors at the individual level. The authors explain the concept of "flow," a term developed by psychologist Mihaly Csikszentmihalyi in the 1970s. Flow refers to "a state in which people are so involved in an activity that nothing else seems to matter; the experience is so enjoyable that people will continue to do it even at great cost, for the sheer sake of doing it" (Cskikszentmihalyi, 1990, p. 4). A key dimension of flow is the match between a person's skills and the challenge presented by the activity, whether it be one-handed golfing for an individual with right hemiparesis or a stimulating supported-discussion on politics for an individual with Broca's aphasia. Jon Lyon (1998) stated that everyone, including adults with aphasia and their family members, need frequent and predictable occurrences of flow in their lives "when the actual act of participating in life dominates self-awareness..." (p. 222). Although flow has been studied extensively in a variety of populations and cultures over the years, the experience of flow in people with aphasia has not been investigated until recently. Sather et al. (2017) highlight results from two studies (Sather, 2015) that included a focus on the influence of environmental factors on flow in adults with aphasia. Speech-language pathologists and other health care professionals can consider these findings when working with people with aphasia to optimize participation in their everyday lives.
The third article focuses on environmental factors at both the individual and societal levels. Howe (2017) argues that a lack of communicatively supportive opportunities for social participation is a critical barrier for many people with aphasia; as Nina Simmons-Mackie (2008) contends, "Without opportunities to communicate, improved language is a trivial accomplishment" (p. 304). The article recommends that speech-language pathologists use their specialized expertise in aphasia and communication to play a key role in helping overcome this barrier. Specific strategies for achieving this goal are provided in relation to four levels of social participation: interacting with others without doing a specific activity with them; interacting with others during activities in which there is a common goal; interacting with others to help a specific person or group of people; and interacting with others to make a contribution to society. Clinicians can consider these approaches to facilitate better inclusion of their clients with aphasia in society.
The final three articles in this issue address environmental factors at the societal level. In the fourth article, Solarsh and Johnson (2017) describe the development of communication access standards in Victoria, Australia. Speech-language pathologists, community members, and people with communication support needs, including individuals with aphasia, collaborated to establish a rigorous process for assessing the communication accessibility of businesses and organizations in the state. As of mid-2016, 200 businesses and organizations in Victoria had been awarded a communication access license, allowing them to display a symbol that identifies that the facility is communicatively accessible. The resources and processes described in this article can inform the development of similar standards in other parts of the world.
In the fifth article, Pearl and Cruice (2017) focus on environmental factors at the societal level in relation to research participation. People with aphasia are often excluded from research (Brady, Fredrick, & Williams, 2013). Pearl and Cruice (2017) report on the stages involved in including adults with aphasia in the development of accessible research documentation. The article describes the key elements of this collaborative process, and also provides information about valuable resources that researchers can use to make their research inclusive for people with aphasia.
In the final article in this issue, O'Halloran, Carragher, and Foster (2017) consider environmental factors at the societal level as well. They reflect on the life experiences of one man living with aphasia in the community and consider the interplay between aphasia and environment on health and well-being over time. They compare how well the ICF and the Social Determinants of Health model (Solar & Irwin, 2010) account for this man's experiences and propose that the Social Determinants of Health model provides a useful way to conceptualize the impact of the environment on people with aphasia in the long term.
A fully inclusive society would be one where people with aphasia had access to the same opportunities, activities, supports, and services that are taken for granted by other members in the community. Some of the articles in this issue provide examples of resources, strategies, and processes that can help achieve this critical goal for individuals. Other articles point the way to creating standards, systems, and services that create enabling environments for all people with aphasia, now and into the future.
-Tami Howe, PhD
Issue Editor
Assistant Professor
School of Audiology and Speech Sciences
Faculty of Medicine
University of British Columbia
Vancouver, British Columbia, Canada
[email protected]
-Robyn O'Halloran, PhD
Co-Issue Editor
Lecturer
Discipline of Speech Pathology
Department of Community and Clinical Allied Health
School of Allied Health
College of Science, Health, and Engineering
La Trobe University-Melbourne Campus
Bundoora, Victoria, Australia
[email protected]
REFERENCES