Media Representation and the Stories We Tell

This week in class, we talked about how having a diversity of stories is extremely important in creating a complete picture of a culture, and how this can help us to better achieve cultural humility as occupational therapists. This is an idea that I agree with very strongly, especially because, for the last two weeks I've been writing a post on autism representation in media for my new occupation. In our OT Professions class this week, we talked about how only having one story about a population can lead to stereotypes that alienate the population we intend to represent, and I think this tendency has a huge effect on media representation of autism. 

Often, representation in media of autism shows a white autistic man who is able to speak, and other characters see this person as socially repugnant, cold, burdensome, and generally difficult to interact with. Often, this character is only accepted by the other characters because of what they can contribute with their special skills. Obviously this isn't true of most autistic people in real life, but this is often the only representation we get. I've never seen an autistic character in media who is anything like me. 

When we watched a Ted Talk in class about Chimamanda Ngozi Adichie (2009) and her experiences with stories, I empathized a lot with her experiences, even though our walks of life were very different. She grew up seeing only one type of story, never recognizing herself in her stories, and when she met other people, many of them only had one type of story about her culture and her reality. 

In the same way, I have noticed that there is usually only one "story" when it comes to autism, and when someone doesn't match up with that story, their disability is called into question and they are told that they couldn't possibly be autistic, that their story was wrong, similar to how Adichie was told that her story was not "authentically African" simply because she grew up in a middle-class home. Rather than the person's story being misbelieved, it should be the common, overtold narratives that are questioned when we learn that someone's reality doesn't match up with the single story we've been told about their existence.

When it comes to this disbelief, even those closest to us can be affected by the monochromatic stories we hear about marginalized experiences. For me, this happened when I was still undergoing the process of being diagnosed with autism, and I had a conversation in the car with my mom where she didn't quite understand that the struggles of autistic people were also struggles that I experienced. It was interesting because she was the one who first introduced autism as a potential diagnosis for me, but still hadn't fully integrated this into how she saw me as her kid.

She had noticed that I had been more fidgity recently, and that I'd gotten a couple of fidget toys, and she asked me about it. At first, she thought that I was doing more of these behaviors because I needed more attention, which she said was fine because my siblings had also had times where they needed more attention. I explained that for autistic people, these fidgeting behaviors were actually a way to self-regulate and decrease anxiety, and that it wasn't an attention-seeking thing, but that it was something that helped when I was having a hard time. I went on to talk a little bit more about other experiences I had that were similar to other autistic people, including things like sensory overload. She was a little confused at this point, since to her this all felt pretty sudden. She expressed to me that she wasn't sure that all those things applied to me, even though she knew that, logistically, I was well on my way to an official autism diagnosis. 

For me, this was a really hard conversation, opening up about things I struggled with and then being told that, no, I didn't struggle with them. But then I realized that, for much of her life, my mom had been told a single story about autism, one about tragedy and hopelessness. She didn't see that in me, so in that moment, she didn't see how I could be autistic. 

I wasn't sure how to respond for a little bit, but eventually I decided to start with what she did know about me, her daughter. When I was in high school, I was pretty competent scholastically, but when it came to driving, I struggled. I didn't get my license until I was 18, and I only got it then because I knew I'd need to drive myself to college. Learning to drive was really challenging for me. Too many things to keep track of, too much input, and way too many rules. If I messed up, someone could die, and I would be responsible. A lot of high school kids don't take that fact very seriously, but I took it a little too seriously, and driving terrified me. In my sophomore year, I took driver's ed during the summer, and even though I passed the written test, I failed the driving test the first time I took it. There was one memorable time when I was driving with my parents and I made a mistake that scared me, and I got overwhelmed enough that I didn't want to finish driving for that trip. I did eventually learn to drive, but after failing my first test, my parents stopped pushing me as hard to get my license at the same time as everyone else. 

Eventually though, I did get my license, and I've done a lot more driving now to where I don't feel overwhelmingly anxious every time I'm in the driver's seat. It still stresses me out a little bit, and I am excited for the day that self-driving cars are reliable and affordable, but I also appreciate the routine that comes from taking the same route to school every day. 

As an autistic person, my struggles learning to drive weren't unique; many other autistic people have trouble with the fast-paced executive functioning and decision-making tasks involved in driving. For some of us, it takes a little more time to learn, and for others, we may never learn how to drive, and that's okay. 

When I had this conversation with my mom, I shared with her this fact, that I struggled with learning how to drive, how it still stresses me out, and I shared that this is a common experience for autistic people, and she understood. In that conversation, her single story about autism shifted just a little bit, so that she could see the label of autism and still see me. Since then, we've had a lot of smaller conversations about autism, and she is generally more accepting of when I voice my experiences, but this conversation always sticks in my mind as a time when my story overcame the "single story." This desire to share more about my many stories has been one of my major motivations for choosing to write a blog about autism for my new occupation.

Of course, my story is not the only autism story out there, so this week I decided to focus on autism representation in media as my next blog post. My emphasis has been to break down what makes good autism representation, and a large part of this is diversity, showing many different stories about many different autistic people, each with a different reality that gives further authenticity to the overall picture of autism in society. This is an area where autism representation still needs a lot of work, showing that more than one kind of person can be autistic, and that autism varies greatly from person to person.

In her Ted Talk, Chimamanda Ngozi Adichie in her story, she mentioned that even though she had experienced various trials such as family members dying from lack of medical care and relative food shortages due to parent's income, if she only focused on these stories, people would have an incomplete view of her reality and the diversity of her experiences growing up in Nigeria. 

Similarly, the "tragedy rhetoric" of autism can be harmful in how it gives people an incomplete view of autism, only showing the downsides without showing any of the benefits to being autistic and being around autistic people. Often, autism is viewed as a tragedy, a burden, and a deficit when it comes to communication, independence, and interacting with other human beings. However, I see autism as an important part of how I understand the world. Because of my autism, I am detail-oriented, I see things differently than other people, and I have a passion for protecting the rights of people with disabilities. I can better empathize with others with disabilities because of my experiences as a disabled person. I am socially awkward, and I do get overwhelmed sometimes by loud environments or uncomfortably warm classrooms, but if I only told the stories that ended in tears, people would have an incomplete view of what autism meant to me, and what it means to others on the autism spectrum. 

In the words of Chimamanda Ngozi Adichie, "When we reject the single story, when we realize that there is never a single story about any place, we regain a kind of paradise" (Adichie, 2009). In writing my blog, I continue to share these stories, even if "paradise" is still pretty far away.

References:

Adichie, C. N. (2009). The danger of a single story [Youtube video]. In YouTube. https://www.youtube.com/watch?v=D9Ihs241zeg

‌https://www.youtube.com/watch?v=H7dca7U7GI8&t=2s