Picture a scenario: One evening, I’m sitting with a group of friends at the table of a busy restaurant. It’s clear that I’m somewhat distracted already; the waiter and busboys are perpetually flanking us on all sides, all too quick to snatch our plates away or refill our glasses. At the table next to us, a set of parents tries to corral their toddlers as they scream, drop sticky bowls of sherbet, and leap from their seats to explore. The lights, bright and intrusive, glow overhead.
And then, without any notice, a live musical act begins setting up in the corner and testing their instruments. This simple act puts me over my tolerance threshold, and suddenly, I am in shutdown mode, dissociated and uncomfortable, swathed in the physical reaction to too much sensory stimuli, and unable to see or hear properly. My head aches and, under my skin, the march and burn of — what, blood? Errant fire ants that somehow found a doorway into my system? The feeling of being gone, unable to see, hear, interact, maintain composure, or surface from this state of being, means I need to find a quiet, safe place — stat. I rise from the table, and I jet towards the front door.
Get me home.
I have sensory processing issues. Let’s talk about the three big Ds that people use when describing them:
I am a woman with sensory differences. Welcome to the first D! I am different when it comes to how I perceive the sensory world around me. My brain is wired differently. I don’t process sensory information the same way as most people because I have structural, neurological differences. It’s not unlike someone with Epilepsy or Multiple Sclerosis; something is not the same in the wiring of my brain. And that’s totally cool.
When I show up to dinner, I am arriving at the party with sensory differences. Of the eight friends, another one of us may also have sensory differences. People make mention of a sensory spectrum that, like human sexuality, represents all possible variations of the experience, and I am 100% on board with this idea. After all, we know better these days than to say one experience is “normal” and another is not. Yet, even by using the word “differences,” we recognize that we are comparing ourselves to a larger group and that we don’t entirely fit in the same parameters.
The difference — there we are again — is that it doesn’t just end there for me. I don’t go, “Gee, I process things in another way than person X” and go about my life. My sensory issues affect most moments in my day. They affect my life choices and my decisions, both in the moment and in the goal-setting future. They affect the people with whom I spend time, the brands I select, the type of employment that I choose. In short, my sensory issues affect my entire life.
Sometimes I fantasize about the person I’d be without sensory issues. What would I like? Would I bungee jump? Walk the Appalachian Trail? Surround myself only with chihuahuas? Volunteer for Greenpeace? Start a band? I can’t know because my sensory issues are such that they’re an inherent part of who I am and how I experience the world. I’m a woman with brown hair and green eyes. I’m a woman with sensory issues.
I am also a woman with a sensory disorder. What makes what I have a disorder? The term “differences” doesn’t cover enough of what I contend with on a daily basis. A disorder considers of patterns of behavior and thinking that influence our experience of the world. I most certainly have a pattern, as do most adults with sensory issues. We react to certain stimuli the same way every single time. Our thoughts, especially for those of us who grew up without a diagnosis, often turn to similar, self-defeating statements in the presence of these stimuli.
Having sensory issues makes functioning in the sphere typically inhabited by others complicated. I cannot behave the same way as most, and so I am perpetually struggling to function in an atmosphere that isn’t designed for someone like me. In the dinner scenario, I have a disorder when I struggle to interact easily with the environment — as I always do. I have a disorder when the lights bother me. I have a disorder when the sounds set me on edge. Inside, I am thinking “It’s okay. You are a trooper. You can do this!” or “Dammit, woman, you’ve failed yet again to maintain your composure in public.” These are the words I’ve always said to myself, the reactions I’ve always had to the information that my brain and body just cannot process. This is my pattern.
I am a woman with a disability when I can no longer function in a given situation because of my inability to process. When I am forced to leave the restaurant because I can no longer interpret the barrage of sensory information, I am disabled. From within the weird, imprisoned bounds of a shutdown, peering out at the world, detached from my body, unable to hear or see or feel where my fingertips end and the outside begins, I am disabled. Toss out your pretty spectrums and hug-a-tree mentality. It’s not about being different or unique or whatever word you choose to use. In that moment, I am disabled because I cannot function. I cannot see or hear or feel where I am. I am disabled because, for that moment in time, I am literally exhausted by my own wiring.
For me, saying “Oh, it’s only a sensory difference” is often too dismissive (more Ds). It’s dismissive of the fact that I struggle on a regular basis — and that my struggle is nasty, meaty, and real. It’s dismissive of the fact that when I lose my faculties, it is a scary, surreal, hopeless experience. It’s dismissive of the fact that I have struggled my entire life in the face of this unnamed, unrecognized condition that’s powerfully shaped who I am and how I engage with the world.
I am okay with each D-word used, as long as it’s used fluidly. To me, they all represent different but valuable aspects of my sensory life. The flexibility of terminology allows me to dial up or dial down my message to reach others. Sometimes, it’s important for me to say that I have a “neurological disability” because in the moment, I am actually disabled and need someone to be my eyes and guide me home. Sometimes, to convey the life-long complexity of my sensory issues and their patterns, I like saying that it’s a “disorder” — because it isn’t just a one-time thing. Sometimes, I prefer “differences,” especially when I am trying to reinforce the idea that I am dealing with a uniquely challenging system and therefore a uniquely challenging approach to the world.
We all have our own sensitivities to these terms and our own preferences about them. In my personal book of life, none of them takes away the humanness of a person with sensory issues. They only allow for a broader dip into the pool of human experience. They give those of us who are suffering permission to be who we need to be. Differences, disorder, and disability are just three words to help me describe my experience of the world.[Headline image: The photograph features a white person with strawberry blond hair holding their hands up to their ears and closing their eyes.]
Rachel S. Schneider, M.A, MHC is a trained Mental Health Counselor and proud Sensory Processing Disorder (SPD) adult. She was diagnosed with SPD in 2010 at age 27 and since then has advocated for adults with her neurological condition through her writing and related outreach projects. Rachel authors the blog Coming to My Senses and maintains a website on adulthood SPD. She frequently blogs for the Sensory Processing Disorder Foundation and writes for Sensory Focus Magazine, and has most recently been featured on The Body is Not An Apology, Mind Body Green, and the third episode of the SPD Parent Zone Podcast. She tweets about SPD at @coming2mysenses and posts about SPD on Facebook. Rachel lives in New York City with her husband and she firmly believes that her body is not an apology. It is a triumphant shout.
This piece first appeared on Rachel’s blog Coming to My Senses and is reprinted by permission.