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(c) sumos

Being Autistic at Summer Gathering

(c) sumos

© sumos

It’s Monday at the Friends General Conference (FGC) summer Gathering. I’m attempting to make my way to the cafeteria for lunch after an invigorating first session of a workshop. There are two options to access the cafeteria: waiting in a line that snakes down a large set of stairs and out the door, or taking the elevator. As someone who usually uses the elevator, I look back and forth from the line to the shiny gray doors, inwardly fighting the shame that comes from thinking that taking the elevator is cheating, cutting to the front. I finally decide, knowing that my body would not tolerate balancing on a staircase for that length of time.

The elevator doors open to the cafeteria floor, and I am immediately assaulted with auditory and visual stimuli so intense that I am forced to lean against the wall for support to get my bearings. I retrieve my noise‐reducing earmuffs from my bag and wonder how a community known for its silence can be so loud. I feel guilty then for thinking ill of our community.

With the noise feeling slightly more under control, I reassess the cafeteria and my ability to navigate it. Four or five stations are set up with unclear options being served and no way of finding out each menu before waiting in a long line. My already slightly impaired cognitive processing ability is slowing way down as I realize that I could be here for a long time and never find food that, with my food allergies, is safe to eat. I think back to emails to the food coördinator: receiving reassurance that an entire station would be devoted to foods fitting my needs. No matter what direction I turn in, I can’t identify where that station might be.

The visual noise brought on through this sea of bodies and the actual noise that my earmuffs cannot contain become too much to handle, and I flee the cafeteria quickly, without any food at all. I turn a corner and find a moment of privacy, and my body cries without permission. I cry because the sensory overload of the day thus far—a wonderful workshop paired with a terrible cafeteria—is too much for me and my autism to handle by ourselves. I cry because I’m not completely sure who to ask for help right now, and what I would even ask for if I did. I dread the rest of my week as I wonder how or if I will surmount this problem three times a day, if being Autistic* might threaten being full.

Summer Gathering is a place that I’ve looked forward to all year, but in this moment, I will give anything to just go home. I walk back across campus to my dorm room—a single, thanks to very important insight I had in advance about my need for solitary breaks away from the commotion. I reflect as I walk about the financial cost this room has, especially considering that I was not able to obtain the amount of financial aid I had requested. I retreat to my room for my cell phone, a device that I have always left in my room at gatherings as an intentional way of staying present but which never leaves my pocket again this trip. I call my spouse back home for advice and listening. It rings to voicemail.

 

I am told by many that I am incredibly insightful and highly verbal most of the time. I have a strong grasp of what it means for me to be Autistic, to have a major anxiety disorder, and to live with chronic pain. This is not to say that I always handle being disabled with grace or perfection. I have had autistic meltdowns in the grocery store, as an adult, because I was too tired; in too much pain; and the lights, noise, and smell altogether were too much to handle. (One specific incident involved me on the floor of the bakery section, rocking, covering my ears, and humming loudly to myself. My spouse was able to calm me, but we did have to abandon our full shopping cart and leave.)

Because I know many ways that my disabilities affect me, I know how to plan ahead. For the FGC Gathering, I requested a single room, even though I knew I couldn’t afford it. I noted the need to be housed on the fragrance‐free floor. I carried noise‐reducing earmuffs with me at all times. I registered as a priority rider on the golf cart. I noted food allergies on my registration. I printed the schedule of events in advance, mapped out what events and worship sessions I would attend, and chose specific blocks of time where I would retreat and recharge. Knowing through research that the campus had a coffee shop, I included daily coffee in my travel budget so I would have a familiar coping skill to access every day. I requested a wheelchair at the airport and priority boarding. I practiced responses to use if someone questioned my need for accommodations while traveling. I brought my own pillow because I knew it would help me feel secure right away. I likely did a lot more.

And yet, no amount of planning on my part could fix an environment that had not prepared to accommodate me. Like the grocery store example, I was prepared and excited for the gathering, but the gathering was not prepared for me.

 

I did stay for the remainder of the week. I graciously received spiritual nourishment that I very desperately needed and that I am still drawing from months later. I was and still am blessed to be f/Friends with both of the co‐clerks of the access resources team; together we brainstormed some possible ways of dealing with the cafeteria—none of which were great choices, if I’m honest. My true saving grace ended up being a fellow attendee in my workshop, who had similar food restrictions. At every meal, she met me outside, I donned my earmuffs, and she led me through the cafeteria, sometimes with my eyes closed, and back outside. My ability to eat, a primal basic need, fell completely on the shoulders of one person. Thankfully someone was capable and willing to do so with joy.

I am an established Friend in a community that is present at the FGC Gathering. I am aware of my needs and am frequently able to communicate them to others who can help. I have an Autistic profile that includes a need for a good deal of social time, even if I later need to recover from it. Because of these things, I was fed—spiritually and physically—throughout the rest of the week. If any one of my traits had been missing or different, I may have subsided on coffee shop pastries that would have made me sick with allergens. I can see spending even more money to reroute my travel arrangements early. I could also see myself as a newcomer who never came back and never knew the spiritual high that could be experienced after a wonderfully exhausting week of feeling the love of Spirit and Friends. We do many things right, but we need to do better. Our broad FGC community needs to do better, along with our monthly meetings who create the Gathering environment. I need you to do better, before the same barriers create an intolerable atmosphere that I choose to avoid. We need to do better for the person standing next to me that does not or cannot let you know.

* At times, I choose to capitalize “Autistic.” This is purposeful and powerful. Not unlike the difference between Friends and friends, capitalization of this word matters. Uncapitalized, autism is simply a medical diagnosis. With the capital A, it represents a social movement, an identity, and a culture of people. More information is available online with a simple search of “Why I use a capital A for Autism.”

 

 

Veronica Berg is a social work student, minoring in Deaf studies at the University of Southern Maine. They sporadically attend Portland (Maine) Meeting and also worship at High Street UCC in Auburn, Maine.  Veronica was introduced to Quakerism through FLGBTQC, and remains an active Friend in that community.


Posted in: Disability and Inclusion, Features

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