I thought that this year for SMA Awareness Month, I’d share a few posts by other people I know who have SMA, so that you get to hear different perspectives and life stories. And of course, who better to be first than my sister?
Hi all, Jess here! I’m the other Tomko sister. The one who is everything that Heather is not.
Anyone who knows my sister and me knows that we are polar opposites. Anyone who does not know my sister and me thinks we’re the same. I don’t mean figuratively the same – I mean they literally think we’re the same person. It’s an interesting phenomenon, really. We are two individuals with different hair colors, different facial features, and different body types, and yet our one commonality (the wheelchair) blurs and masks all of our individualities.
I tend to be very cognizant of how I appear to others. Self-awareness is great and all, but it took me some time to realize that I do not need to act as a representative at all times for individuals with SMA. While it’s true that my behavior will influence how a person sees my particular subset of the disability community, I am not responsible for the entirety of society’s perception of people in a wheelchair. And honestly, I care far less now than I used to what people think of me. These random people are not going to even get close to scratching the surface of my identity, so why bother trying so hard to lead them in the correct direction? That energy is better suited to more productive ways of making change and connections. Like, for instance, this blog post.
Connections, shared experiences, honest conversation, and receptive listening are all agents of change. But more importantly, people are agents of change. We’re told to focus on our similarities because that’s what will bring us together, but I don’t completely agree with that. Let’s (respectfully and compassionately) talk about our differences too because they are what make us unique. Ignoring our differences will only cause them to remain shadowed and us to remain ignorant.
Most days I don’t view my disability as the most prominent part of my identity. It’s in there somewhere between woman, university-employee, feminist, mind-wanderer, nerd, daughter, sister, and music-lover. Next time you see someone around and have that almost instinctual urge to categorize or classify someone, even if just in your head, I encourage you to take a beat, and maybe just don’t. Instead, just give a friendly Pittsburgh hello and make Mr. Rogers proud.