Advocacy in Action: A New Aphasia Support Group
Alison Dinkins, Graduate Assistant
Advocacy can take on many forms. Here at the UofSC Aphasia Lab, we are given the invaluable opportunity to be advocates for our participants, whether that is by connecting them with support groups, hosting community events, or campaigning for improved legislation for individuals with disabilities in South Carolina. One of the most powerful forms of advocacy, however, is when an individual begins to advocate for themselves and other members of their community. Stroke survivor and UofSC Aphasia Lab participant Steve Gordon has shown us how stepping into acting as your own advocate can not only enhance your own recovery, but also improve the lives of other individuals with aphasia in your community and beyond.
After having a stroke five years ago, Steve Gordon’s life was drastically affected by his newfound language difficulties. Having aphasia was particularly challenging in that his career required him to give presentations in which he frequently spoke to crowds of a hundred or more. Immediately following his stroke, Mr. Gordon relied upon his family to advocate for his recovery. “My brother lives in London but came to visit when I had my stroke. He stayed for almost a month and did everything he could to help me recover. He found the aphasia lab on the internet while researching ideas to help,” noted Mr. Gordon.
Following participation in one of our studies, Mr. Gordon began searching for aphasia groups in the Charlotte, NC area where he resides, but found that no such group existed. “The doctors were saying there should be tons of meetings and there weren’t. The closest aphasia support group was in Raleigh, 2.5 hours away. That’s when I told Dr. Spell “If nobody will do it, I’ll do it.” It just so happened that Concord, NC speech-language pathologist Mallory Moore had noticed the same need.
“Over the last couple years, I had observed a need in our community for an aphasia-specific support group in addition to a stroke-support group. Many of my patients with aphasia would discharge home from inpatient rehabilitation, not knowing that they were not alone or feeling socially isolated because of their communication struggles, or feeling anxious about what the future held for recovery and life with aphasia. I decided to take the plunge and work with my leaders at Atrium Health to establish a support group here in Concord. It was kismet that just a month or two into working with my leaders on a timeline and location for starting a group, that Steve reached out to Atrium Health with the same goal of starting an aphasia support group. We were put in touch with each other and started sharing ideas. I was very happy to have a partner to brainstorm ideas and work together to have our first meeting,” remarked Ms. Moore.
After months of planning and coordinating, the group is now meeting on a monthly basis. The groups are not limited to people with aphasia; friends, family, and caregivers are welcome to attend. “If they are involved with aphasia in any way, they are welcome to come,” says Mr. Gordon. The response from the community thus far has even led to the formation of a second group that will begin gathering in Huntersville, NC in April.
Both Ms. Moore and Mr. Gordon offered words of wisdom for other professionals or individuals affected by aphasia that are interested in becoming an advocate and filling a need within their community. “I told myself I ‘needed more experience’ or needed to be ‘an expert’ before starting an aphasia support group. I would encourage other SLPs to trust themselves and trust their passion for this population. Don’t wait until you “feel” like you are an expert. Do it and you and the attendees will all learn together,” Ms. Moore noted. When asked what advice he would give to other people with aphasia looking to start their own groups, Mr. Gordon says “You have to reach out-to hospitals, doctors, or SLPs, make flyers, and then follow up. It takes time and it’s not going to happen the next day. If necessary, have someone without aphasia there to advocate for you and help deliver your message when talking to professionals, and then follow up again. When you start talking to people, you won’t believe how many are willing and able to help.”