Aphasia Recovery Connection
June is Aphasia Awareness Month, so once again I’ll be featuring apps and resources for aphasia this month to help bring attention to this under-acknowledged disorder.
Aphasia, or impaired language after stroke or brain injury, can be an extremely isolating disorder. When a person loses their ability to communicate in all or part, their social circle often shrinks quickly. If a person with aphasia lives in a remote or underserved area, they may have no access to other people with aphasia to learn from and relate to, leading them to feel even more alone with their condition. The Internet holds great potential for connecting people, but until recently, has not offered many resources beyond information about the disorder.
ARC, or the Aphasia Recovery Connection, is an amazing resource for people with aphasia, their loved ones, and speech-language professionals. ARC makes use of many social media channels, video conference technology, and live events to achieve their mission to help “end the isolation aphasia brings.” ARC was founded by two dynamic young people with aphasia, David Dow and Christine Huggins, with the support of their mothers, Carol Dow-Richards and Kim Huggins.
Most of the ARC action happens on the main Facebook group, where more than 2,200 people interact. There is also a Facebook group for caregivers and friends, as well as another for kids with aphasia and their parents. ARC organizes weekly video chats using Oovoo (a Skype-like group video chatting platform), video app demonstrations by an SLP student, and word games facilitated by SLPs. While being able to read and type is helpful, there are many aphasia-friendly videos posted to ARC. Members can use text-to-speech and speech-to-text technologies to aid participation as well. ARC maintains great collections of links on Pinterest, has many wonderful videos on YouTube, and has just joined Twitter to connect people in even more ways. All of these platforms can be accessed from apps on touch-screen devices or on desktop or laptop computers.
ARC has organized several large events, including conferences and cruises. I’m excited to be joining them next summer on a cruise to Alaska! These live events help people who have met online to connect in person, as well as engage people with aphasia who are unable to participate online. While the founders live in Nevada and Ohio, ARC members live around the world with many in Canada, the UK, and Australia.
The founders of ARC presented at the 2013 ASHA convention to share their experiences with SLPs in packed rooms, and will hopefully be in Orlando this year to do it again. They also frequently speak at aphasia centers around the country. Their work has rightfully earned them the 2013 RAISE award given out by the National Stroke Association. They are currently applying for non-profit status so they can continue their mission with the support they need.
As an SLP, I love being a part of ARC for two reasons. Reading the posts of people with aphasia and their caregivers has given me unique insight into the struggles and achievements they face at every point along their recovery. I can reply with advice, or simply watch as they support each other. The other reason I love ARC is to finally have an amazing resource to pass on to my clients who need support groups or ongoing practice during or after therapy. You can literally see the progress some members make in their writing skills as they write posts to communicate with other ARC members. No assigned paper homework could ever be so effective or motivating.
Join ARC if you want to be involved, but please let your clients with aphasia know about ARC so they can access this virtual support community that is very real and powerful.