Promoting Wellness Through Action: HARC’s Aphasia Community Taskforce (ACT)

ACT participants(left to right): Joseph Nealy, Cheryl Adamson, Ruth Kamba, Linda Millman, Michael LeBourgeois, Pat Stalsby. Not pictured: Bruno Wesolek, Winston Goodrich and John McDowell.

What is Wellness? According to the Merriam-Webster Dictionary, wellness is “the quality or state of being in good health especially as an actively sought goal.” Dr. Blair Justice, author of A Different Kind of Health: Finding Well-Being Despite Illness, and one of the founders of the Houston Aphasia Recovery Center, quotes the U.S. Surgeon General, who said proper measure of health is not the absence of disease but a sense of well-being. Says Dr. Justice, “Well-being means having a deep and abiding sense that, despite the day’s woes, life is good. “ Wellness, then, is a state of health that includes many aspects of one’s life: exercise, eating right, psychological contentment, being productive, and generally doing for oneself what needs to be done in order to have an overall satisfying, and for some, superior quality of life. Dr. Justice defined this as “subjective health.” This is measured by one’s emotional and social well-being, which research has shown has a powerful effect on one’s physical health and even longevity.

For persons living with aphasia (PWA), the term “wellness” takes on a modified meaning. It may still involve exercise and eating right, and, of course, happiness, but throughout the recovery process PWA explore, and eventually come to realize, what “wellness” means for them now as they become comfortable in their new roles as people living with aphasia. Aphasia is isolating because of the loss of language and the lack of education and awareness of aphasia in society. The social and emotional aspects of aphasia become the most prominent parts to a sound recovery as our participants get to the point where they are moving past having the aphasia be the main focus of their lives.

At HARC, our mission statement describes HARC as a wellness program, where we see it as our job to provide the needed education, advocacy and resources for people with aphasia, their caregivers, and the greater Houston medical community. HARC is a safe haven where participants come for therapeutic socialization and long-term recovery. Our vision speaks much of the same, as we dedicate ourselves to generating awareness and support, facilitating research, and fostering wellness and recovery in a life-affirming environment.

One of the recent ways HARC has promoted wellness, well-being, and life participation is through community advocacy. Participants are gradually re-engaging in the community and often share stories with us about their struggles to educate and describe to individuals what “Loss of language, NOT loss of intelligence” means and what that odd word, aphasia, really is for them. PWA interact daily with people who wonder, why is this person unable to say what they want through words when they try to order a sandwich or why do they need things repeated or presented slower. People often mistake aphasia for lack of intelligence. What if we could ask these businesses or individuals to make a few simple modifications, such as giving them choices on a menu with pictures and words to aid comprehension, asking a clerk to slow down when they speak and take a little more time to explain things, or simply giving the customer with aphasia a little extra time to express themselves?

In order to make this vision a reality, HARC’s participants created the Aphasia Community Taskforce (ACT). ACT participants would educate their own local businesses to be more aphasia friendly by going out together in small groups to the community businesses with prepared materials to educate and explain to the business management what could be done to help customers with aphasia. During a group “brainstorming” session, it was decided the PWA should have something to wear when going into the community to promote HARC and what we are doing; a way of looking “official.” A design committee (all PWA) created the first HARC T-shirts (see photo). The future plans for the ACT group is to present these businesses with a “HARC Hero” certificate to be hung at the business to show how they made a difference in the lives of our PWA.

ACT is an example of empowering PWA in a way that increases self-confidence, helps to increase social and emotional well-being, and impacts overall wellness and life participation. It is activities like this that provide an opportunity for individuals with aphasia to realize that aphasia does not have to restrict them from doing the things they want to do. Even though they live with aphasia, they can still find well-being.

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