Yesterday my youngest child turned five years old. Birthdays are a big deal around here, as no day is promised to any of us and I view a new year of life as a new adventure to be embarked on in the story of our lives. Additionally, in our family we don’t believe in a complex Christmas full of expensive gifts because we feel that holiday has become overly materialistic and that’s not what it’s supposed to be about; we would much rather splurge for our kids’ birthdays instead! However, this year there were a few unavoidable obstacles in the birthday weekend plans. Our hope was to work around them to still try to commemorate the day. And we did, but in the meantime what happened yesterday has earned not one, not two, but THREE blog posts.
Yup. It’s that bad.
These posts will describe how NOT to behave with disable people, about how TO behave with us, and about intersectionality. But equally importantly, they will help me get some things off my chest.
As each of the posts deals with a different topic, I am publishing them all on three different blogs that are each related to the focus of the post. The first post is this one here on my personal blog since it’s fairly general. The second one, which is about halfway finished, will be on Respectfully Connected since it’s about parenting. The third, which I haven’t started yet but hope to today, is about intersectionality and will be on Autism Women’s Network.
I had to go to a mandatory training yesterday morning because my first aid and CPR certification is expiring. For four hours. We got up and had a pancake breakfast for the birthday boy – just the way he likes them (sliced in small pieces with none touching the edges and with a certain type of syrup). Then I headed out to the training, which was led by UpBeat CPR of Texas (Houston and Waco areas mainly). I’ve attended trainings with this provider several times before; it is a family business run by a funny, spirited woman named Susie Long who is also an adoptive parent of three disabled children (who are now young adults) in addition to her adult biological daughter. A former foster parent and a longterm Texas resident, she peppers her trainings with humor and real life stories from the field and from her family life that make the training go faster. And you learn a lot too; she’s very knowledgeable as well as personable. If I had to get up on a Saturday morning for a training, I was glad that it had to be with her.
She started off with the first aid portion of the training. All was well until close to the halfway point of the training when she asked us to take out our pens and jot down a few points. She had provided pens for all of the participants as well as an informational packet for us. The packet was thorough so most of the training there was little need for us to have to write anything because she’d included tons of details for us. However, there was a part where there was an acronym about stroke (F.A.S.T.), and she wanted us to write down what each letter stood for and to also summarize what to look for.
That wouldn’t have been a big deal except that the man two seats over from me kept clicking his pen off and on. Off and on. Off and on.
These weren’t any ordinary pens. The owner had special ordered them to hand out for her trainings, and each had her business’ name and contact info printed on it. There were heavy pens and though they were obviously bulk ordered they were not the super cheap kind. I’d almost rather they had been the cheap kind because those type have a more “muted” clicking sound when you click them on and off. But because the heavier ones are made to last longer, they have a better quality spring and better quality material overall. They make a very loud, very distinctive click. Which is fine – except it was happening over. And over. And over. And over.
I completely “get” that nearly everyone, regardless of neurology, needs to stim in some kind of way to pass the time. As a Autistic woman, I have a lot of stims, though most are fairly difficult for people to notice since a lot of them are either internal (running through songs or phrases repeatedly in my head; moving my tongue along my gums in a particular pattern over and over; squeezing and releasing certain muscles while I sit) or fairly non-descript (twirling my hair, gently wringing hands, squeezing a stressball or small stim toy, etc). I am not attacking this man for needing to have some sort of movement. But the pen clicking was assaulting my senses in a way that’s difficult to describe. It literally hurt my ears to the point that I was sitting at my seat – in the second row, near the front of the presenter – visibly wincing and blocking my ears because it was painful. And to make matters worse the dude wasn’t even doing it rhythmically to allow me to at least predict when the next click might be coming and mentally brace myself accordingly. I could have worked with a pattern maybe, and block my ears right before the click, unblock after the click, and then block again, etc. But nope. He was clicking the pen in a very random, haphazard, dissonant, “I ain’t got an ounce of rhythm” sort of way.
If you don’t live with any type of sensory differences or don’t know anyone with them this whole post probably makes no sense to you. It might even seem like I’m being petty and nit-picky about a minor issue. Believe me when I say that I’m not. That clicking pen was not something I could just “ignore.” I sincerely wish it was. But it’s not something I can control – the feeling. Some days are better than others, and on those “good” sensory days mercifully many of the sounds that might be bothersome (which are often sounds that most people filter out with ease) don’t sound super loud. But some days my senses are heightened; this was one of them. So the already loud pen click sounds almost like a gun being fired.
If I could have overlooked the pen I would have. But I was already silently overlooking the glaring fluorescent light, the odor of cigarette smoke from one man’s shirt wafting into my nostrils, the humming of the air conditioner, the slightly too-close proximity of the seats which didn’t give me adequate personal space, and the chilly room temperature. My capacity to “deal” with that sound was already limited by the amount of work it was taking for me to maneuver through all of other sensory stuff. Additionally, I had to expend energy to process all of my socialization and communication at the training in real-time, because otherwise people can misinterpret them. Am I raising my hand too much and answering too many questions? Is my voice too loud or too soft? Was that a rhetorical question or one that was really soliciting input? Am I talking too fast/too long/using words that are too big? Basically, am I translating my message into NT(neurotypical)-speak well enough?
Click click click. Click click click. I needed to do something. Now.
“Sir,” I said gently as to not interrupt the presenter, gesturing in the direction of Mr. Pen Click. “Sir.” He didn’t hear me, but the person next to me helped me to get his attention. Finally Mr. Pen Click looked my way.
“Excuse me, sir,” I said, “Could you please stop clicking your pen? The sound is really bothering me and it is making it hard for me to concentrate.”
He looked at me in disbelief, and then his face contorted from disbelief into irritation. He glanced down at the pen in his hand as if to say, “This little sound?”
“I’m autistic, sir. The clicking sound is very loud to me as a result. Thank you.”
His face looked even more annoyed and he dismissively turned his head away from me as I spoke toward the presenter, pointedly ignoring me. So rude. But at least he stopped clicking the pen.
Things should have been fine after that. But they weren’t. Clicking pens are kind of like yawns; they’re contagious…once one person does it, others follow. He stopped clicking his pen, but he’d inadvertently started a trend; now a few other people were clicking their pens too. I couldn’t tell exactly who, but at least one sounded as though it was several rows behind me near the back. It was difficult to discern where the others were coming from. But there was no way to discreetly ask for it to stop when the people weren’t at my table.
Click click click. I plugged my ears and scrunched my shoulders down as my brain was pummeled by the sounds. Click click click. I closed my eyes and prayed as I felt my heart pounding and the headache starting. Click click click. I felt tears welling.
I picked up my packet and my phone, stood quietly, walked away from my table, and headed out the door. I exited and then stood right outside the door where I was far enough away from the clicking sounds to get relief from it. I couldn’t see what was going on from my new spot but I could still hear the presenter. I figured I could just follow along with my packet.
A few moments later the assistant popped her head out the door. “I noticed you standing there. Everything okay?”
I let her know that I was okay and explained that I was still very much paying attention, but I needed to be outside because the clicking pen sounds were difficult for my senses. I told her I was autistic. She nodded, and without missing a beat, she said, “Do you want me to walk around to find the people who are doing it and ask them nicely to stop?”
I shook my head. There were far too many people for that in the packed conference room; it would be probably be disruptive no matter how tactfully she tried to do it. Furthermore, the reaction of the man I had already asked to stop hadn’t been exactly encouraging. I thought it was kind of her to affirm my right to be in the class like everyone else and not standing outside the room in the hall, but it would have been too much trouble and possibly counterproductive. (Please note: I’m not ashamed of my diagnosis. But I didn’t see how it would in this circumstance unless I planned to have her announce it to the whole room, and for various reasons too long to describe here, that wasn’t appropriate for this setting.)
She then suggested that I come back inside and sit in the far part of the room near her area, away from the others. I would be able to both see and hear the presenter, but would hopefully not have to hear the telegraph-style sound effects from the pens. I came back inside as she suggested and pulled up a chair next to her. But unfortunately within a minute or two I had to move my chair outside where I was before. The sounds still carried.
Not even two minutes later the door opened and the assistant joined me outside. She had an iPad in her hand. For 15 minutes she stayed with me out there showing me each and every slide and image the presenter was showing the others so that I didn’t miss anything.
Then the presenter took a break. I re-entered the room and started to explain why I’d left, but she smiled and waved me off, telling me she already knew. Apparently her assistant had spoken to her. She told me that she wasn’t enamored with the sound either, thanked me for being there, and asked me to return to my seat, promising that after the break she’d take care of things.
And she did. When the training resumed, she started the second segment by stating, “Ladies and gentlemen, I run an interactive class. I want it to be hands on and fun for everyone, and I want everyone to learn. I’m going to show you everything you need to know and you’re going to act it out with me afterward. You will not need to write anything down because you are going to do it all here and then you got to take all of your materials home. Except my mannequins; you can’t take those! (Laughter.) So please put all pens and paper down on the table and pay close attention to me for the rest of the class. You don’t need your pens at all.”
It worked perfectly. I didn’t have to contend with the noise nor did I have to be segregated from the others. She did it smoothly and moved on with the assumption that she expected people to comply. It seemed evident to me that had anyone started clicking their pens after she’d asked everyone to put their pens down that she would have handled it without hesitation. Fortunately she didn’t need to do so. Everything went well and I was able to finish the training with the others.
I tried to thank her and the assistant both before departing, but they wouldn’t hear of it. To them, accommodating my need to not have my senses assaulted was as natural as the wheelchair ramp, the hearing aid one woman was wearing, or the Amharic interpreter in the back of the room (who was there to assist a non-English speaking East African couple who was taking the class too). They didn’t see why I felt the need to thank them because they felt I deserved to have my needs met so that I could fully participate. Sadly, their way of thinking isn’t universal.
I titled this post the way that I did in tribute to the quote that states, “Justice is what love looks like in public.” It is clear to me that to Susie Long and her staff, accommodation is what respect looks like in public. By willingly and cheerfully accommodating me, they showed me a great deal of respected – something disabled people aren’t typically granted without a fight.
If you are ever in southeast Texas and need an inclusive, respectful, humorous, and knowledgeable first aid/CPR/AED etc trainer who openly respects marginalized people, I urge you to look up the upbeat team at Upbeat CPR and patronize their business! You won’t be disappointed. Their website is http://www.upbeatcpr.com/
That’s it for this post. Stay tuned for Part 2!