When I was in college, I looked into joining a sorority. I searched YouTube to learn more about the different sororities, and I found that one of the sororities had a video interpretation of TJ Sullivan’s “You Are Always Wearing Your Letters.”
TJ Sullivan’s words truly fascinated me. In short, he explained that once you join a fraternity or sorority, you are always representing the past, present, and future members of the organization, and you are putting the letters into your heart for the rest of your life.
The same is true of disabled people, especially autistic people. However, unlike those who accept offers to join fraternities and sororities, we don’t get to sign a contract to undertake the great responsibility of “always wearing your letters” after we get that first t-shirt, go to a party, or get initiated into the club after a ceremony rooted in years of tradition.
We don’t get to choose membership into an autism or disability diagnosis club, but we do get to choose membership into the supportive communities that surround our shared heritages and experiences. We are given the lives we live, and how we choose to live our lives determines how wearing our identities to the outside world pans out.
Our identities aren’t always proudly displayed on t-shirts, pride flags, buttons on backpacks, or tattooed on our foreheads, but they are part of us just the same. And they are visible more often than we like to believe. Invisible disability isn’t always invisible. No matter where I go in life, it is safe to say that people will know I am Autistic, and that is a life decision I have proudly and happily made.
Whether or not I like it or choose it, I have a lot of responsibility in my everyday life as a woman on the autism spectrum, and an even greater responsibility by being open about being autistic. Part of community or team membership is having your teammates’ backs. I am expected to carry myself a certain way to contribute to my team. I am expected to be adequately educated on autism for any outsider who peppers me with questions. Somebody else’s perception of me will influence their perception of the entire autism community. Every good thing I do could reflect well on us; a mistake of mine could reflect poorly on our social skills or us as people.
Instead of wearing sorority letters, I am always wearing the Autistic Badge of Responsibility. I am responsible for wielding knowledge about myself and my community as power. That knowledge and power is also a tool to educate those who come into contact with me. I am responsible for a deep sense of self-awareness and having words for things that people don’t normally think about or don’t know. I am responsible for the fact that how I conduct myself reflects on the millions of autistic people around the world, even if that isn’t something I am actively thinking about.
For many people, I am the first autistic person they meet. With that comes the great responsibility of wearing the Autistic Badge of Responsibility – what I say about autism, and how I conduct myself – will ultimately determine that person’s entire perception and opinion of autistic people. Humans naturally stereotype. Stereotyping isn’t always negative, however – I can encourage positive ideas about people on the autism spectrum. Your stereotype of autistic people might come from a family friend, or the media.
Unfortunately, autistic people get a bad rap in the media. We only just got an autistic actor playing an autistic character in a Broadway show. Hateful rhetoric is spewed constantly; some typical people even throw ‘autistic’ around as an insult akin to the r-word. People see us as objects of inspiration, apathetic robots, dangerous people, or Dustin Hoffman’s character in “Rain Man.” This community is more than all of those stereotypes. But what I say or do could determine whether or not you see this community as deserving of pity, or deserving of respect – that is where the duty and pressure of representation from wearing the autistic Badge of Responsibility comes from.
And by wearing our letters – our Autistic Badges of Responsibility – we get a lot of empowerment because we get to determine the narrative on autism going forward just by living our truths. But we have a lot of responsibility about education and our own self-awareness. It should not be any one person’s job to change the world, or to revolutionize stereotypes and stigma, but to others outside of us – it sometimes is. I’ve learned that this is true for many marginalized folks. Sometimes it is my job to represent everyone because I will be the first point of contact with the autistic community someone gets. And that idea of me influences that person’s idea of millions of other people.
It’s a lot of work, it’s a lot of pressure to be accountable for the good, the bad, and the ugly that comes with being autistic, but it is also the most valuable and important thing I could do for autistic people who came before me, people who are autistic and proud today, people who are autistic and quiet today, and autistic people who have yet to exist. We are always wearing our letters – our badges of responsibility – and they are always on display to the world.