When I say the word "Aphasia," does anything come to mind? Maybe you might have heard about it in that one psychology course you took back in high school, or maybe it was somewhere else you heard the term? Any idea what it is? Anything? Ironically, the blanket term used to describe the common (yet really complex, debilitating and diverse) affliction of being 'lost for words,' so to speak, also leaves many outsiders and suffers (initially at least) equally as lost for words. But that's not your fault. Kearns explains that "If you mention AIDS or Parkinson's most people's faces will light up with instant recognition[; but] If you mention aphasia, you may very well be met with a blank stare" (p.456). The National Aphasia Association "Aphasia FAQ" page states that "Aphasia affects about one million Americans -or 1 in 250 people- and is more common than Parkinson’s Disease, cerebral palsy or muscular dystrophy. Nearly 180,000 Americans acquire the disorder each year. However, most people have never heard of it."
Let that sink in for a moment.
Aphasia is not something we (in the broad sense) just learned about recently. In fact, one Egyptian Papyrus dating back to the 16th century BCE, known as the "Edwin Smith Papyrus" (after the dealer who purchased it in the 19th century CE), is the first recorded case of Aphasia caused by a traumatic brain injury in the temporal lobe (McCrory & Berkovic). So if it's been around for pretty much as long as we have had brains to injure, how do so few people know about it? The answer is simple: Aphasia isn't "sexy" (Kearns, p.458). What I mean by "sexy" is the celebrity spokesperson-type fanfare associated with many diseases and afflictions, as celebrities are usually the one's who get the most press-coverage when coping with them. Unlike the other, more well-known disabilities, Aphasia doesn't have a well-known face associated with it, and therefore has not become a common household term like AIDS or Parkinson's. The disorder itself is not something you can 'see', or readily recognize without prior knowledge; You wouldn't notice it until the afflicted person tries to speak, read, or write, and even then you might not realize what's really going on.
Source: Kevin P. Kearns- 29th Clinical Aphasiology Conference
You may think, what's the big deal about press coverage and awareness? The fact is, simple 'associability' is crucial for the treatment of illnesses and afflictions of all types. Indeed, "without public awareness a vicious cycle is set into play - there is less funding for research, less money for services and, perhaps most serious of all, less empathy and understanding for people with aphasia who are trying to reintegrate themselves into the community" (Kearns, p.456). You may ask, quite innocently of course, why sufferers of aphasia simply aren't put into the spotlight to spread the word? Aye, there's the rub. The reality is that many of these people will lose their jobs, their friends, their agency, their everything really, just by losing the ability to use their voice, to express their thoughts. Many of them would of course be self conscious of, and even afraid to acknowledge, their affliction, and to bring them into the spotlight might not be the most sensitive approach in their eyes. And that is provided they have recovered enough to even discuss their affliction; after the onset of Aphasia, some patients never produce more than one coherent word again. Every day we're judged based on our ability to coherently express ourselves to other people, and this is especially true when in the eyes of the media. Indeed, "in order to best get the attention of those in power, to begin to effect change, we must be able to use their dialect" (Bloom). That may seem simple enough to you or me, but imagine waking up from a stroke (which some patients don't even realize has happened because of the nature of such events) and suddenly being unable to speak, or to understand the people you talk to every day, or to write a grocery list, or to even read a simple sentence. Just imagine it for one second. Think about how EVERY part of your life could and would change. How could someone in this position even begin to come close to finding the words to advocate for themselves, let alone others like themselves?
That's where we come in.
This lack of awareness and advocacy for such a common, debilitating affliction is what motivated the art piece I intend to design for my midterm. Before I posit my idea, let me -briefly- rid you of the itching desire to know what aphasia is (unless you already Googled it like I probably would have; I recommend the link in my references for the basics). There are several different types of aphasia, all resulting from different combinations of language deficiencies (both written and oral), and are characterized the ability to speak fluently/coherently, to comprehend others, and to repeat a given word without error. Aphasia is most commonly caused by stroke in adults, but it can happen to anyone of any age, gender or race.
I intend to develop an interactive exhibit that will help spread awareness about Aphasia by immersing the un-afflicted in the day-to-day realities of the afflicted. This, I believe, would be an ideal way to explore how cognitive ability and intellect of the afflicted are left completely in tact, but the information that needs to be conveyed is getting lost or confused or somehow mistranslated. People who step into the exhibit would be signing the same contract that the Little Mermaid does, but it wouldn't to be to run after some Prince Charming and True Love's Kiss. Instead, they would give up their voices for a while to help raise awareness, donate, and give voices back to those who have been without them for so long.
Bloom, R. (May 2012). "Inescapably, You're Judged by Your Language." The New Yorker.
Kearns, K. P. (May-June 2000). "29th Clinical Aphasiology Conference."Aphasiology: an International, Interdisciplinary Journal. 15(5/6): 456-8.
McCrory P.R., Berkovic S.F. (December 2001). "Concussion: the history of clinical and pathophysiological concepts and misconceptions". Neurology 57 (12):2283–9. doi:10.1212/WNL.57.12.2283. PMID 11756611.
National Aphasia Association. "Aphasia FAQs". http://www.aphasia.org/aphasia-faqs/ Web. 2 May 2016.