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A critique of awareness

Welcome to the second semester of NeuroDivergent! While I know that my final column last semester may have given the impression that I was done as a columnist, I still have the desire to do more deep dives and tell more stories. So, to kick things off in a new year, here’s a (hopefully well-structured enough) rant inspired by seeing one bumper sticker on the way back to campus.  

Simple phrases are the key cogs of successful charitable initiatives. Fundraising organizations look for phrases that succinctly summarize their goals, create a sense of urgency that leads to enthusiastic donors and can be easily promoted via shouts at rallies or Instagram hashtags. Among these campaigns, few words are deployed as much as the term “awareness,” a term that seems unproblematic but can produce unhelpful — or even harmful assumptions about people who experience hardship. 

When the language of “awareness” is used, it often refers to debilitating conditions or circumstances. Think “cancer awareness,” “climate change awareness” or “bullying awareness.” All three of these examples blatantly call attention to problems. Furthermore, awareness then necessarily inspires action to address these problems before they damage more people’s lives. 

But what if people are told to be aware of something, even though it isn’t a problem in the first place?   

This is my gripe with “autism awareness” — a phrase I’ve witnessed around me throughout my life. Although many of the people who hashtag the phrase and put it on their bumpers are genuinely well-intentioned, I believe that whenever anyone states that one should be “aware” of autism, autism becomes implicitly pathologized. This discourse indirectly makes the case that much like cancer, autism is a problem that must be stopped. Thus, autistic children become tragedies, treated like innocents who had their lives permanently altered by a harmful force in their brains. As a result, we consider solutions like searching for the “cure” to autism or utilizing degrading forms of therapy, or else these autistic individuals are doomed to a lower rung on the social hierarchy. While the people advertising the “awareness” slogan may not be explicitly making such claims, they mold the cultural discussion around autism in a way that makes these ideas more prevalent. 

Now, being autistic is not easy. It can facilitate stress in social situations where you’re constantly worrying about coming off as awkward. It can make you feel sensations on overdrive, often against your will. But something being occasionally challenging doesn’t make it a problem. The difficulties faced by autistic folks do not justify the framing of autism as a “disease,” as something that people need to become aware of to help prevent or cure. For all the challenges, autistic people also can understand our world in a unique way, a way that doesn’t limit itself to the burdensome standards of neurotypical expectations. In addition, by building welcoming cultures for neurodivergent folks, we can give them the avenues to process their personal struggles or insecurities. Rather than treating autism as the problem, we should identify the ways in which we have collectively failed to empower autistic individuals in ways that amplify the challenges they encounter on a daily basis. 

Unfortunately, we often turn down opportunities to do this. Because we automatically associate “awareness” campaigns with positive charitable efforts to improve people’s lives, we give our money and volunteer hours without taking the time to consider what the actual “problem” is. In our hectic lives, we often don’t spend enough time reflecting on how supposedly charitable organizations describe their goals. We simply listen to their phrases and buzzwords and assume that they must be doing the right thing. While this is a clear issue for how we think about autism, it’s also a general issue with how we think anything we use charity to address. 

To be clear, there are numerous legitimate groups that use their resources to empower autistic people. The Autistic Self Advocacy Network (ASAN), for instance, is led by autistic people and forefronts the goal of ensuring equal rights and opportunities for neurodivergent individuals. However, it’s easy to be manipulated by people and organizations with fancy logos and memorable slogans that lack a vision for empowerment. I’m guilty of this too, as I’ve occasionally contributed to organizations because they claimed to be helping autistic people — only for me to eventually discover that their projects treat autism itself as the reason for people’s pain and suffering. 

We should be holding these organizations to higher standards, encouraging them to take into account the insights and perspectives of autistic people and support justice-oriented solutions. In order to do this, however, we need to think before we elevate these organizations’ slogans and phrases so that we can recognize when their aims are misguided. We also need acknowledge that building an inclusive culture goes beyond simple awareness campaigns; rather, it requires systemic action to improve educational, political and social environments. 

All of this is challenging work — much more challenging than spreading “awareness.” But inclusivity can only be ensured by those who are focused, dedicated and willing to deeply analyze the most common narratives about autism.  

Jack Griffiths is a senior at Notre Dame majoring in English with a supplementary major in global affairs. His areas of interest include neurodivergence, migration and the intersections between faith and public policy. When he’s not writing, you can find him singing with the Liturgical Choir, walking around the lakes or playing Super Smash Bros with folks in his dorm. He can be reached at jgriff22@nd.edu.

The views expressed in this column are those of the author and not necessarily those of The Observer.

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