Advocating with a Sensory Processing Disorder
So, I have a sensory processing disorder (SPD), and it makes me really sensitive to touch and sound. Sometimes, this greatly affects what kinds of advocacy actions I can and can’t do, so I wanted to talk a little bit about what having sensory issues means for my experience with advocacy.
First, a little explanation if you’re not familiar with my SPD: loud noises, unexpected noises, and certain types of sounds put me in a fight-or-flight state. So does physical contact with other people. Sometimes, I get sensory overloads when it’s all super overwhelming, and my brain feels so scrambled I can’t recognize what’s happening around me: I may not be able to speak, or not able to understand what people are saying to me, until I get to a quiet place to sort things out. (On my other blog, I attempted 21 ways to describe sensory overload, and realized it's actually quite difficult.)
For example, I remember being in my 10th grade chemistry class when three things happened: a test tube shattered on the floor, my chemistry teacher laughed his great booming laugh, and classmates started shoved past me to clean up the mess. My ears were ringing and my hands wouldn’t stop shaking. My skin was crawling, and maybe I was breathing too fast or maybe I wasn’t breathing at all, but the point is I couldn’t tell and it was wrong either way. A person stood in front of me (long brown hair? blue t-shirt?) her concerned face saying words I couldn’t understand. I heard every syllable she spoke like it was something painful poking at me, but I didn’t know where one word ended and the next one started, or what any of them meant. I knew I recognized this girl, but it took several horrifying seconds to remember that this was Sophia, my friend and my lab partner. All I could think of was that’s the kid I built a cardboard seismograph with in 7th grade…
Here’s another example. In June 2021, I was in Washington D.C. for a Sunrise Movement action at the White House. I was so excited to take action for good jobs and a livable future while the infrastructure bill was being put together, and finally get to meet people I’d been working with virtually for about a year!
The day my mom and I traveled to D.C. though, we ran into a problem. It was a long morning of bumping into people at two airports, being squeezed into a seat right next to my mom and dealing with the roaring noise of the airplane for hours, sounds of traffic and shouting human voices when we got outside, and then… my hair.
I’d recently had a haircut, and it was just above shoulder-length at the time– too short to pull back into a ponytail, to my horror. (I had a very complicated relationship with my hair before I cut it short, where sometimes ponytails or braids hurt and sometimes they were my saving grace, but either way, I always needed the option).
I felt like there were fingers on my neck every time I turned my head and felt my hair brush my skin. I could only take it for so long before I broke down in tears on a concrete stoop outside Chipotle. Not my finest moment.
Mom and I hurried to the nearest convenience store and bought all the headbands, bobby pins, rubber bands, and hairclips we could carry. I knew this was only the beginning- with a weekend of art builds and trainings in a big church with hundreds of people, to get ready for the action on Monday, I’d need to be at the top of my game to cope with all the background noise, excited shouting, screeching microphones, and well-meaning hugging.
So, what do I do to manage my sensory processing disorder while staying active in advocacy?
One very popular form of advocacy/activism is in-person protests. I don’t talk about it a lot on this blog because, well, I usually don’t attend events like this for the SPD reason.
When I do, I do my best to stay in the back of a crowd, away from other people so I can exit quickly if needed, and I wear ear protection- small earplugs or larger earmuffs, depending on how much sound I need to cut out.
Another activity I do at least a couple times a year, as an advocate, is collaborating with other advocates at conferences and “lobby days”— entire days full of meetings, workshops, and lots of togetherness with people I’m not necessarily close with.
To help my sensory system regulate, I make sure to take a lot of quiet breaks by myself and have my self-care activities ready to go.
Honestly, though, the main reason SPD never stops me from doing advocacy is because there are plenty of advocacy actions that never require me to go out of my comfort zone at all. Writing letters to the editor alone on my laptop is great! There are endless emails and phone calls and small-group meetings to do, all important work, that don’t bother me one bit.
When the COVID-19 pandemic started, I started doing a lot more virtual advocacy actions and realized it was a HUGE plus. Facilitating phonebanks and other advocacy trainings with the Sunrise Movement, as well as attending team meetings virtually, was so much easier than presenting to a crowded room or large hall. For one thing, I can control the volume on my computer! I’ll immediately turn it down when a video, or someone’s voice, is too loud.
Also, live captions on Zoom is really helpful for me when I’m in an overload that makes it hard to understand people talking out loud. I can mostly follow along with captions in a zoom meeting, and if I have a question, I can type it in the chat.
So, having zoom meetings with captions is a great way that people can support me! As well as just being understanding of when I need space to regulate and take care of myself on my own. (My team at Sunrise is amazing at this, shoutout to them for having a great team culture around prioritizing our health and well-being!)
Another thing I really appreciate from other advocates is when they let me decide for myself what I can and can’t do. The level of stimulus I can handle varies day to day, even different times of the day, depending on other stressors and health factors, and I’m very aware of it. (The amount of class time I have to spend assessing whether the icky feeling of having something touching my ears outweighs the benefits of wearing earplugs to muffle sound, rather than paying attention to the lesson being presented by the teacher, is frankly ridiculous.) Nobody else can decide that for me.
Describing the expected crowd size and noise level of an event, so I know what to expect? Helpful! Pressuring me to back out because you assume I can’t take care of myself? NOT helpful. Expecting me to be actively engaged in an environment I’ve told you is hurting me, to suck it up because “everyone’s a little uncomfortable”? NOT helpful. I’ll see for myself and let ya know.
If there’s a point to all this, I suppose it’s just that this is how a particular health issue impacts my engagement with political advocacy, and it doesn’t really put me at a disadvantage– I just have a little more to think about that other people don’t. I believe that’s true for all young advocates, actually. At the very least, it’s the fact that you’re under 18 and unable to vote, maybe unable to drive, that gives you more to navigate than adults do, but it doesn’t make you any less capable of enacting change!
Every person with a sensory processing disorder experiences it differently, and something that’s a good accommodation for me could be a barrier to another neurodivergent or disabled person. So, I’m sharing my experiences as an example, just scratching the surface of why it’s important to make sure you're meeting your entire group’s needs when you’re part of an advocacy movement. When in doubt, just ask how you can be helpful! (Asking Google is a good start for more general questions, so it’s not always on the disabled or neurodivergent person to explain basic stuff to you, but you don’t have to be scared to ask as long as you’re really trying to be inclusive).
If other advocates around me weren’t as committed to helping me stay safe and healthy as they are, I know advocacy would feel really unreachable to me. I’m thankful that they are, and I’m highly motivated to keep learning about how I can do better for others whose needs aren’t being met in advocacy spaces.
There was a loud, crowded Sunrise Art build for our DC mobilization on June 28, 2021, so myself and two other friends who also have sensory issues/PTSD chose quiet, out-of-the-way jobs like cleaning up paint rollers or gluing sticks to our picket signs– it was a ton of fun!
Like, this school event? (photo is pre-covid) No. absolutely not. Even if we’re not in a pandemic, you will not see me in a crowd like this. [A cheering crowd forming Ws with their fingers runs onto an indoor basketball court, celebrating a win. Signs in the background say "Bomber Territory"- our school's mascot is, unfortunately, a bomber plane.] |
First, a little explanation if you’re not familiar with my SPD: loud noises, unexpected noises, and certain types of sounds put me in a fight-or-flight state. So does physical contact with other people. Sometimes, I get sensory overloads when it’s all super overwhelming, and my brain feels so scrambled I can’t recognize what’s happening around me: I may not be able to speak, or not able to understand what people are saying to me, until I get to a quiet place to sort things out. (On my other blog, I attempted 21 ways to describe sensory overload, and realized it's actually quite difficult.)
For example, I remember being in my 10th grade chemistry class when three things happened: a test tube shattered on the floor, my chemistry teacher laughed his great booming laugh, and classmates started shoved past me to clean up the mess. My ears were ringing and my hands wouldn’t stop shaking. My skin was crawling, and maybe I was breathing too fast or maybe I wasn’t breathing at all, but the point is I couldn’t tell and it was wrong either way. A person stood in front of me (long brown hair? blue t-shirt?) her concerned face saying words I couldn’t understand. I heard every syllable she spoke like it was something painful poking at me, but I didn’t know where one word ended and the next one started, or what any of them meant. I knew I recognized this girl, but it took several horrifying seconds to remember that this was Sophia, my friend and my lab partner. All I could think of was that’s the kid I built a cardboard seismograph with in 7th grade…
Here’s another example. In June 2021, I was in Washington D.C. for a Sunrise Movement action at the White House. I was so excited to take action for good jobs and a livable future while the infrastructure bill was being put together, and finally get to meet people I’d been working with virtually for about a year!
The day my mom and I traveled to D.C. though, we ran into a problem. It was a long morning of bumping into people at two airports, being squeezed into a seat right next to my mom and dealing with the roaring noise of the airplane for hours, sounds of traffic and shouting human voices when we got outside, and then… my hair.
I’d recently had a haircut, and it was just above shoulder-length at the time– too short to pull back into a ponytail, to my horror. (I had a very complicated relationship with my hair before I cut it short, where sometimes ponytails or braids hurt and sometimes they were my saving grace, but either way, I always needed the option).
I felt like there were fingers on my neck every time I turned my head and felt my hair brush my skin. I could only take it for so long before I broke down in tears on a concrete stoop outside Chipotle. Not my finest moment.
Mom and I hurried to the nearest convenience store and bought all the headbands, bobby pins, rubber bands, and hairclips we could carry. I knew this was only the beginning- with a weekend of art builds and trainings in a big church with hundreds of people, to get ready for the action on Monday, I’d need to be at the top of my game to cope with all the background noise, excited shouting, screeching microphones, and well-meaning hugging.
I did the Sunrise Action with my hair completely tucked into an official Sunrise Movement bandana, and took several sensory breaks throughout the day with my amazing action buddy. Hooray! [Yara stands with their back to the camera on the right side of the image. Their hair is hidden under a bright yellow bandana and the back of their t-shirt says "Good Jobs, Livable Future." Other activists are standing or seated around Yara, also holding signs with their backs to the camera. One person is painting chalk mural in the background, and another person is speaking into a megaphone.] |
So, what do I do to manage my sensory processing disorder while staying active in advocacy?
One very popular form of advocacy/activism is in-person protests. I don’t talk about it a lot on this blog because, well, I usually don’t attend events like this for the SPD reason.
When I do, I do my best to stay in the back of a crowd, away from other people so I can exit quickly if needed, and I wear ear protection- small earplugs or larger earmuffs, depending on how much sound I need to cut out.
I'm wearing my earmuffs, getting ready to go to a march. [Yara and their mom smile at the camera, wearing winter coats and holding a "Moms Demand Action for Gun Sense in America" sign. Behind them is a relatively empty intersection, a concrete building, and a flagpole.] |
Another activity I do at least a couple times a year, as an advocate, is collaborating with other advocates at conferences and “lobby days”— entire days full of meetings, workshops, and lots of togetherness with people I’m not necessarily close with.
This is the kind of setting I can usually function well in, with small groups. But notice that we’re in a much larger hall (you can see other groups in the background) and if the volume gets to a certain level in a space like this, I might shut down. [Seven people, mostly adults and one young teenager, sit in a circle of chairs facing each other with serious facial expressions. Many hold laptops and papers, and wear red conference landyards. In the background, other groups are similarly clumped together in a hotel ballroom with dull grey carpet, walls, and chairs.] |
To help my sensory system regulate, I make sure to take a lot of quiet breaks by myself and have my self-care activities ready to go.
Some new strategies I found this semester include these TouchPoints that gently vibrate and help me calm down, as well as reading bite-sizes pieces of Invisible Cities by Italo Calvino. [Two wristbands rest on top of a book with a white cover, on a black countertop. One of the wristbands has a light that is glowing blue.] |
Honestly, though, the main reason SPD never stops me from doing advocacy is because there are plenty of advocacy actions that never require me to go out of my comfort zone at all. Writing letters to the editor alone on my laptop is great! There are endless emails and phone calls and small-group meetings to do, all important work, that don’t bother me one bit.
Virtual postcard-writing to get out the vote in the 2020 election! My Sunrise Movement hub watched Knock Down the House while writing together, and this was a very manageable activity for me. [Yara's laptop is covered in postcards. One pile on the left has the artwork side facing up, with a bird flying over a city and carrying a banner that says "Strike! Vote!" The pile on the left has the handwritten messages to voters facing up. A Zoom meeting is in progress on the laptop, screensharing a clip from the documentary "Knock Down the House"] |
When the COVID-19 pandemic started, I started doing a lot more virtual advocacy actions and realized it was a HUGE plus. Facilitating phonebanks and other advocacy trainings with the Sunrise Movement, as well as attending team meetings virtually, was so much easier than presenting to a crowded room or large hall. For one thing, I can control the volume on my computer! I’ll immediately turn it down when a video, or someone’s voice, is too loud.
Also, live captions on Zoom is really helpful for me when I’m in an overload that makes it hard to understand people talking out loud. I can mostly follow along with captions in a zoom meeting, and if I have a question, I can type it in the chat.
This Sunrise meeting was really fun because we played a Kahoot with trivia about our fellow advocates, climate justice policy priorities, etc. But the noise level with the Kahoot was an immediate NO from me, so I had to leave the tent… [Six people, wearing masks and all carrying phones or laptops, are standing around in the shade of a large, blue and white striped tent. A plastic table is covered in t-shirts.] |
So, having zoom meetings with captions is a great way that people can support me! As well as just being understanding of when I need space to regulate and take care of myself on my own. (My team at Sunrise is amazing at this, shoutout to them for having a great team culture around prioritizing our health and well-being!)
Another thing I really appreciate from other advocates is when they let me decide for myself what I can and can’t do. The level of stimulus I can handle varies day to day, even different times of the day, depending on other stressors and health factors, and I’m very aware of it. (The amount of class time I have to spend assessing whether the icky feeling of having something touching my ears outweighs the benefits of wearing earplugs to muffle sound, rather than paying attention to the lesson being presented by the teacher, is frankly ridiculous.) Nobody else can decide that for me.
Describing the expected crowd size and noise level of an event, so I know what to expect? Helpful! Pressuring me to back out because you assume I can’t take care of myself? NOT helpful. Expecting me to be actively engaged in an environment I’ve told you is hurting me, to suck it up because “everyone’s a little uncomfortable”? NOT helpful. I’ll see for myself and let ya know.
This was a local Stop AAPI Hate demonstration I went to in April 2021, that was really cool because it was organized completely by high school students. But it required a long period of lying on the floor by myself in my room afterwards, because all the honking cars (honking was a good thing! That’s what we wanted) really got to me, even with ear protection. I predicted it would be difficult, I made a plan to recover later, and then I still made the choice to go because it was important. [At least twelve people are standing along a busy street, backs to the camera and hair blowing wildly in the wind. They're holding signs (messages not visible in the shot) and waving to the cars. The grass they're standing on is bright green, and the day is grey and cloudy.] |
If there’s a point to all this, I suppose it’s just that this is how a particular health issue impacts my engagement with political advocacy, and it doesn’t really put me at a disadvantage– I just have a little more to think about that other people don’t. I believe that’s true for all young advocates, actually. At the very least, it’s the fact that you’re under 18 and unable to vote, maybe unable to drive, that gives you more to navigate than adults do, but it doesn’t make you any less capable of enacting change!
Every person with a sensory processing disorder experiences it differently, and something that’s a good accommodation for me could be a barrier to another neurodivergent or disabled person. So, I’m sharing my experiences as an example, just scratching the surface of why it’s important to make sure you're meeting your entire group’s needs when you’re part of an advocacy movement. When in doubt, just ask how you can be helpful! (Asking Google is a good start for more general questions, so it’s not always on the disabled or neurodivergent person to explain basic stuff to you, but you don’t have to be scared to ask as long as you’re really trying to be inclusive).
If other advocates around me weren’t as committed to helping me stay safe and healthy as they are, I know advocacy would feel really unreachable to me. I’m thankful that they are, and I’m highly motivated to keep learning about how I can do better for others whose needs aren’t being met in advocacy spaces.
There was a loud, crowded Sunrise Art build for our DC mobilization on June 28, 2021, so myself and two other friends who also have sensory issues/PTSD chose quiet, out-of-the-way jobs like cleaning up paint rollers or gluing sticks to our picket signs– it was a ton of fun!
[Left image: two paint rollers, one orange and one yellow, in a white sink. the faucet is pouring water over them, and the pool of water around the drain is tinted yellow-orange. Right image: over a dozen painted signs are hanging on clotheslines to dry. Color scheme is black, yellow, orange, and red. Slogans include "Biden, ponte las pilas" and "meet with us, not corrupt GOP"]
Comments
Post a Comment