Sensory Issues: Differences, Disorder, or Disability?
This post will probably not make me popular or win me any admirers, and that's OK. I'm learning that sometimes it's the job of an advocate to rally the troops and infuse the world with endless motivation and positivity, and sometimes my role is to force people to take sides, or at least consider different angles of an issue through my writing.
Let's talk about the three big Ds that people use when describing their sensory processing issues:
Picture a scenario: I'm sitting with a group of friends at the table of a busy restaurant one evening. 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 try 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 prior 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 - 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? and the feeling of being no one and nowhere - 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, I jet towards the front door. Get me home.
I am a woman with sensory DIFFERENCES - welcome to the first D! There is not a single doubt in my mind that I have sensory differences. I am different when it comes to how I perceive the sensory world around me. This makes sense. According to the latest scientific findings, 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 that dinner in the scenario, I am arriving to 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 which, like human sexuality, represents all possible variations of the human experience, and I am 100% on board with this logic. 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, unique group, and we don't entirely fit in the same parameters. But even still, if my brain is wired differently, then I do have differences. I fall somewhere along the spectrum of engagement with the sensory world, as do every single one of us on this planet.
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 daily day. My sensory issues impact most moments in my day. They impact my life choices, my decisions - both in the moment and in the goal-setting-future. They impact the people with which I spend time, the brands I select, the type of employment that I choose. In short, my sensory issues impact my entire life. Sometimes I fantasize about the person I'd be without sensory issues. What would I like? Would I bungee jump? Go on safari? Walk the Appalachian Trail? Would I 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 a woman with a sensory DISORDER - hey, hey D#2. I'm sure I'll lose some of you right here, and that's fine. 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 patterns of behavior and thinking that influence our experiences of the world. I most certainly have a pattern, as do most adults that I know 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 our reaction to sensory stimuli. Besides this, having my 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 ok, 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 encountered 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, it is crippling. 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 marginalized or belittled or whatever political word you choose to use. In that moment, I am DISABLED because I cannot take care of myself. I cannot take care of others. I cannot handle the responsibilities of adulthood because I cannot see or hear or feel where I am. I am DISABLED because for that moment in time, I am literally negated by my own wiring.
(Side note: My friend/little sensory sister/illustrator of my upcoming sensory guidebook recently wrote a brilliant post on how she is her disability. I am beyond proud of her for making this claim and taking ownership of this particular D-word. It's a must-read!)
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, unfortunate bully of a 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 they're used fluidly between the three. To me, they 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 I like saying that it's a "disorder" to convey the life-long complexity of my sensory issues and their patterns - this isn't just a one-time-thing, this is a life-long 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.
Like this post or don't, I respect that we all have our own sensitivities to these terms and preferences within them. In my personal book of life, none of them take 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, the full gamut. Differences, disabilities, disorders - just three darling words to help me describe my experience of the world.