The long-awaited month of June is finally upon us. We’re taking to social media and beyond to educate our communities and the world about the importance of aphasia awareness. This time of the year is very important to our family because we’ve lived the struggles associated with this unseen condition. It’s something that feels very personal when it touches your life, and it impacts you in the deepest parts of your innermost self.
While our list would likely be a mile long of reasons why aphasia awareness is so important, this month, we are choosing to focus on three that we’re most passionate about.
1. Striving For Better Communication
Since aphasia is a condition that affects a person’s speech, writing, and sometimes the ability to comprehend spoken language, an obvious reason is to strive for better communication. When we educate others about aphasia and how to best communicate with those who have it, the world becomes a better place.
“Aphasia awareness is crucial to create a more understanding and adaptable community for those of us who have aphasia to live, recover, and thrive.” – Ryan Teal
One step in the right direction of improving better communication is the development of the aphasia ID card. This is a tool for someone with aphasia to let others know how to best communicate with them.
It tells them to:
- Speak slowly
- Focus on keywords
- Provide written choice for answers
- Confirm that the person with aphasia understands
- Informs them if the person uses a writing or device to interact
This sets the stage for a more productive, less frustrating method of communication. By bridging these gaps in communication, it creates an atmosphere that’s less lonely for the person with aphasia.
Loneliness is a very real aspect of aphasia that people need to know about. Imagine if one day, you lost your ability to speak and tell those you care most about the simple words, “I love you.” And what makes it even more frustrating is that you know what you want to say; you just can’t get it out due to the pathways in your brain that were once there but are now broken due to injury. It’s almost like being trapped in your own body.
Not only is aphasia lonely for those who have it, but it can be lonely for caregivers as well. Caregivers are often the forgotten party in the whole recovery process. There’s not a lot of focus given to their mental and physical wellbeing. As a caregiver myself, I experienced this with my husband, who had a stroke at a young age. I was in what I like to call “survivor mode” for a long time. I didn’t care about my appearance. I buried my pain and grief because my main priority was getting my husband recovered. I did all this while juggling all the other moving parts of life because as much as we’d like the bills to pause and the obligations to cease, they don’t.
“It’s essential to raise awareness for those who aphasia, but let’s also not forget to shed light on the impact it has on the caregiver and their mental wellbeing. The loneliness they encounter is just as real.” – Anna Teal
Spreading aphasia awareness can inspire revolutionary communication resources and tools to aid in recovery. For instance, Google released a pair of AR glasses with closed captioning capabilities. While they didn’t develop this product specifically for people with aphasia, they provide a significant value for people who rely on closed captioning text to understand verbal communication.
2. Fighting For Insurance Reform
We all know our insurance system in America is broken. While a restructuring solution is well above my pay grade, there is certainly work to be done to support those who suffer traumatic brain injuries and require longer-term care. For example, it almost required an act of God to get my husband more than seven visits of physical, occupational, and speech therapy. Along with dealing with the emotional impact of a life-changing event, having to continuously fight for care with insurance companies is enough to make anyone extremely weary. This is especially true for young stroke survivors with aphasia who may not have the monetary resources in place yet to afford various forms of therapy that could significantly improve their recovery.
“Those with aphasia need more than seven speech visits. It’s a long-term recovery journey. We need our healthcare system to support this type of care plan.” – Anna Teal
Those with aphasia not only require long-term physical, occupational, and speech therapy services, but there’s also a need to have more accessible and affordable intensive speech therapy programs. My husband and I were blessed to attend the University of Michigan Aphasia Program in Ann Arbor, Michigan, a few years ago. We spent four weeks and five days a week in constant speech therapy sessions with some of the best speech-language pathologists in the country. Ryan experiences significant improvements in his speech and comprehension of pure verbal speech.
Not only did we see huge improvements, but we bonded with people that have enriched our lives beyond measure. We still keep in contact with our friends at UMAP and they’ve even played an important part in the development of our Aphasia Readers books.
My point is that intensive therapy works, but it’s costly. By educating others on this aspect of recovery, its success rates, and the valued emotional support it provides, we truly hope to inspire change through insurance reform to provide this opportunity for those who may not be able to afford such therapy but desperately need it.
3. Improving Societal Norms
For those with disabilities, navigating society can feel daunting and even bring on waves of anxiety. These feelings come from the fear that others will see you differently or even, dare I say, less than. This is the most heartbreaking perspective I’ve seen as a caregiver, even as it relates to my husband. I see the way people look at him in public when they notice that his spastic hand doesn’t look “normal.” And even without a physical disability, those with aphasia that look normal on the outside but have trouble speaking are often looked at like they are not intelligent. These types of stigmas in our society are another reason why aphasia awareness is so important. Inspiring a spirit of love and acceptance is so important in our world.
“Aphasia: Loss of language, NOT intellect.”
While we know some of these goals require a significant fight, we’re dedicated to helping our aphasia and stroke communities have a better quality of life and have accessible resources for recovery. One big step in the right direction is our Aphasia Readers books, which provide an avenue for affordable, supplementary reading and reading aloud resources to improve communication and dialogue.
We hope we’ve enlightened your perspective on aphasia, those who have it, and caregivers who lovingly support those with it daily. Please feel free to comment below if you have any other information that would be helpful for stroke awareness or stroke recovery! For more information about Aphasia Readers, please email us at firstname.lastname@example.org. Don't forget to follow us on Facebook and Instagram for the latest news from Aphasia Readers! If you haven't picked up your first Aphasia Readers: Level 1 book, order your copy HERE!