Kaitlyn Kim was the lead author on this post.

Although you may not consciously think about it, your cerebellum is working diligently behind the scenes to keep you upright and help you maintain your balance. For individuals diagnosed with cerebellar ataxia, coordination of movement is not something so easily taken for granted.

Cerebellar ataxia results in difficulties with gait and balance. Other associated symptoms include dizziness, blurred vision, slurred speech, difficulty with swallowing, general clumsiness, sloppy handwriting, poor fine motor skills, and involuntary tremors. As a result, many nondisabled observers characterize individuals with ataxia as “staggering” or “under the influence.” These assumptions can be extremely harmful to one’s self-concept, especially as many individuals with ataxia reflect that learning about their diagnosis can be an incredibly isolating experience.

A variety of pathological processes can cause the cerebellum to atrophy. Some individuals may inherit the condition genetically, but many others have idiopathic late-onset cerebellar ataxia (ILOCA) that arises from acquired conditions, sporadic neurodegenerative disorders, or unknown processes. In addition, the rate of progression of cerebellar ataxia can vary among individuals, and the condition itself may be due to a combination of multiple factors, such as strokes, brain lesions, multiple sclerosis, storage disorders, and encephalopathy.

Scripts and the Stone Age Brain

Rusty Ford Pinto logo

Source: Jill Heyer/Unsplash

In the infamous Ford Pinto cases of the 1970s, overreliance on scripts, or sequences of expected behaviors for a given situation, were largely responsible for why automobile explosions resulting in injuries and deaths went unaddressed. Dennis Gioia, Ford Motor Co.’s recall coordinator during the incident, adapted to a very complex and time-sensitive work environment by heavily relying on scripts as a simplifying mechanism. The Pinto’s design was rushed through production to get it to market, causing some of the vehicles to burst into flames when their gas tanks ruptured in collisions. Due to the mounting public scrutiny, the company tested eight Pinto vehicles internally and discovered that all of them failed the impact test. This should have been compelling evidence that the original design was unsafe in the event of a collision. However, Gioia failed to deem these cases statistically significant enough to prompt remediation since they contradicted his scripts to produce as cheaply and efficiently as possible for the Pinto model to compete.

The Pinto scandal, though tragic, helps us learn that socialization processes are largely responsible for what we consider appropriate or not. In a position that requires both speed and accuracy, decision-making becomes more of a binary process: When confronted with a stimulus, one immediately decides if it is within "normal" bounds or what is expected. As such, scripts can be useful and have an evolutionary benefit, allowing humans to process a great multitude of information daily by prompting us to act more instinctively under time pressure. In the Upper Paleolithic era, part of the Stone Age, people who were not of the same tribe or clan were often considered enemies—hence, the “kill or be killed” trope. However, when scripts are implicitly oriented toward discriminating against those we perceive as different from us, overreliance on these “mental shortcuts” is nothing short of dangerous.

Rather than perceiving disability as a problem stemming from internal or dispositional factors, it is important to understand that our built environment was often not designed to include people with disabilities. In public places cluttered with obstacles or bereft of handrails, nondisabled observers may subconsciously judge those with ataxia to be rude or careless in their surroundings without actually understanding them. Even if the observer refrains from making their distaste known out loud, their judgments are made clear through various forms of nonverbal communication, including staring, frowning, or crossing their arms.

In reality, individuals with cerebellar ataxia are, out of necessity, more aware of others than most while navigating in a crowded environment. The last thing they want to do is to draw unnecessary attention to themselves by bumping into others; yet, without basic accommodations, such interactions are inevitable. Though this is out of their control, they are immediately the ones subject to harsh judgment and even ridicule.

Balance Through Community

A genuine community that works to facilitate connection and support can make all the difference. Jason Wolfer, an individual diagnosed with cerebellar ataxia who we had the pleasure of connecting with, has found fulfillment in curating a blog dedicated to fostering an online community. Using the unique ability of the Internet to shrink the time–space continuum, he can share his story with individuals across the globe. This can especially be transformative for those who have yet to come to terms with their diagnosis. Rather than feeling completely alone, individuals are empowered to confide in their unique experiences, recounting both their triumphs and downfalls. In one blog post personifying his condition as a mafia overlord, Jason Wolfer writes:

Ataxia is, among other things, a slimy little schemer...and will do all he can to keep you intimidated. Don't give in to his tricks, but tell everyone you know about him and his evil henchman...and let's continue to shine a light on him and his twisted, dastardly deeds. The hope is that as more people become exposed to his corrosive ways...more and more research will be put in towards ending his reign of terror for good.

Although it may seem that we don’t live in an understanding or forgiving community right now, that can change. Perhaps we can best contribute by educating the people in our sphere. Tangible social change and longstanding de-stigmatization will not be achieved overnight, but we should not lose sight of this crucial mission. We have the opportunity, as family members, friends, coworkers, neighbors, and community members, to similarly serve in supportive roles, ones in which we may facilitate integration and inclusion through genuine efforts to educate, interact, and advocate for accessibility.

Due to an increase in research efforts and ataxia awareness, individuals with cerebellar ataxia are better able to acclimate at home, the workplace, and the broader social sphere using technology and other accommodations. For example, wrist and ankle weights help establish spatial awareness of limbs, and “balance wear vests'' assess weak spots in the chest and utilize weights in those areas to retrain muscles and build strength.

In the wise words of Jason Wolfer, “So, don't lose heart, my friends. I believe that one day we will see [ataxia] come to an end. Until then...keep fighting and hold your head high.”