Creating a self-identity is very complicated, particularly when you have a disability. How do you embrace and own your disability without letting your disability define you? I seem to be collecting disabilities like they are baseball cards lately. So much of my daily life revolves around having these disabilities and the ensuing medical complications. However, I am not my disabilities. They are a big part of who I am, but they do not define who I am.
There are many parts that affect who I am as a whole, such as school, my friends, and my personal wants, needs, and overall opinions. I work hard to make sure that I am comfortable with how I present myself and how I identify in the outside world. I do not get to choose whether or not I have a disability, or even which disabilities I have, but I do get to choose so many other aspects of my identity. And, I get to choose how I wear my disability. Personally, I wear all of my disabilities with confidence, so that the patchwork quilt of my identity cushions the parts over which I have no control.
When I was younger, I had motor and vocal tics. I made involuntary movements and noises. People would ask me if I was okay and I would respond, “Yes, it’s just this thing I do.” Having Tourette Syndrome as my main disability means that I cannot hide it. As I have gotten older, my motor and vocal tics have become more pronounced. They are often front and center and provide a “preview” of me before I even get a chance to properly introduce myself. So, how do I control the narrative? I choose to be outgoing. In a family of introverts, I am the extrovert. I’m totally fine attending a party where I only know the person who invited me. I put myself out there and am happy to go up to strangers to make conversation in such settings. I have a lot to say and being talkative works to my advantage. Frankly, THAT part of my self-identity allows me to push past the first impression my Tourette gives off. The “tic-ing” guy instead is replaced with the “friendly, affable” guy.
I also choose to be an open-minded, non-judgmental person. I’ve had the same two best friends since I was 5 years old. Of course, we have things in common. But, we are also quite different and we struggle with different things. They have always been supportive of me, despite my disabilities. And, in return, I too accept them for who they are. My mom has an expression she often uses: “It’s not my story to tell.” This is why she is a good confidant. I feel the same way about other people. This is a big piece of my self-identity.
I often struggle with emotional regulation. I feel things deeply – both positive emotions and challenging ones. This is a co-occurring condition that often comes with having Tourette. Part of not letting my disability define me is trying to find the positive side to it. For example, I am an empath. Being so in touch with my own feelings helps me connect with others because I can really feel, understand and have compassion for what others are going through. Would I be an empath if I didn’t have Tourette? Being someone who can relate to the emotions of others is a really integral part of my self-identity. I didn’t choose TS, but I do choose to embrace this superpower it brought with it.
Can you guess my favorite hobby? It is playing Dungeons & Dragons. I could pontificate for hours about why D&D is so much fun and why I wish it were real. But, at the root of it, I think about what it allows me to do. I get to create, from scratch, the environment, character and identity of this fantasy world. In my real life, I get to mold and shape my self-identity BUT there are pre-existing conditions. It is important for me to keep reminding myself that while I didn’t get to choose the fact that disabilities are part of my identity package, just like in D&D, I DO get to choose the other parts that round me out. And, maybe the positive side effects of my disabilities are as important and integral to my self-identity as the aspects that I get to control.
Self-identity is a journey and my journey to date has me realizing that my disabilities DO define me, but that is okay because they aren’t the only things that define me. And maybe, just maybe, I wouldn’t be the warm, open minded, confident, gregarious person I am today without them.