Paying For It
One of the things we talk about in disability circles is the common misconception that being disabled means simply being able to do certain things and not able to do other things. In reality, many of us can do difficult things for awhile, but not all the time, and sometimes not for very long. When we do things that are difficult for us we may need to spend a lot of time recovering afterward due to our physical or mental limitations.
I wanted to share with you all my own experience with this need for recovery time after doing something difficult. This past weekend I attended CONvergence and Skepchickcon in Minneapolis. I took a bus there, stayed 5 nights in Minneapolis, and rode home with friends. The convention was a great time and I enjoyed most of it quite a bit.
First of all, CONvergence works very hard to make their event as accessible as possible. Their website does a good job of covering the accessibility issues related to the event and they offer a lot of things that can help people with a huge range of needs. However, some of the things I trouble with are simply inherent to an event like this. The hallways are going to be crowded, there are going to be a lot of people present, the sound level will often be loud, and I will be on an unusual schedule in a somewhat unfamiliar place for several days. There is little that CONvergence can do about these things, but I do find the presence of a sensory-friendly quiet room reassuring (though in my case going to my hotel room was better).
All of the accessibility planning that CONvergence does, including having panel discussions about disability issues and signage around the event to make disabilities visible, really impacts the ways in which the general public responds to people with different needs around them. I feel comfortable in this environment with making my needs known and I have never had anyone there show much surprise or anything but understanding about my need to avoid some spaces, get some down time, or “turn off my ears” for awhile. It may be that people with very different needs than mine have a different experience, but CONvergence is full of people with mobility devices and and other visible and invisible disabilities so it appears that many people find the work that this event is doing to be helpful.
There are also a few things I did during the event this year to help take care of myself. I allowed myself to nap when I needed it, I shared a room with only one other person instead of a large group, I wore earplugs during the room parties at night and sometimes during the day, and generally did less than I tried to do last year. I did host a lower-stimulation pre-party in the Skepchick party room each day for an hour, which was good for me and seemed to be great for some of the people who attended. Last year I had a really rough time during some of the convention and a VERY hard time on my way home and I wanted to prevent that same kind of meltdown.
This worked to some degree. Arriving the day before the con started allowed an easy start and I had a good day on Thursday, and a great day on Friday including participating in the “Worst Pseudoscience of All Time” debate with the Skepchicks and hitting a lot of the parties that night. It was probably the most “on” I have felt in a big social environment in a long time. In this way my self-care plans worked very well. It felt incredibly good to have one day in which I nearly felt normal.
Saturday was harder. I woke up over stimulated, slightly hungover, tired, and… just off. I was already paying for the previous day and still had 2 more days of con to do. I wasn’t scheduled for any panels, which was good because I was definitely fuzzy-brained. I struggle with language a little when I’m like this, tend to repeat myself a bit, and really dislike socializing with people I’m not very close to. I felt disconnected and vulnerable. Luckily I didn’t have a lot of responsibilities so I slept through part of the day which helped enormously and then did far less partying on Saturday night than I had the night before. By the end of the day I felt mostly myself, enough to have some fun, not exactly “on” but not disconnected and absent either.
Sunday the convention starts to wind down and the stimulus decreases pretty fast. I was on two good panels on Sunday, attended a cookout, and got a little sleep before heading home. I’d expended a lot of energy and taken in a lot of stimulation, but I didn’t completely wear out before I got home.
Despite expending a little less energy than last year, recovery hasn’t been easy. It takes several days for me to feel back to myself after any big event, especially one with so much social interaction. My first full day home was a real challenge and after an intense anxiety attack brought on largely by over-stimulation I felt a bit like I had failed completely at taking care of myself and dealing with this event. The following two work days were HARD, and dealing with normal tasks felt like a lot more work than usual. I was clearly exhausted.
Sometimes people say that if those of us with disabilities CAN do something like attend a big event then we must not really be disabled. This is often because they don’t see the recovery time afterwards. My recovery took a few days this time, and by the end of the week I’m feeling basically myself again. Others may take more or less time to recover. But because this recovery is invisible to those who don’t know us well, it lets people continue to mistakenly believe that exertion doesn’t take a toll.
There are also those who believe that if an event is difficult and takes this kind of a toll on us we shouldn’t do it. They forget that we get to decide if it’s worth it. Yes, I pay for it after a big event, but I go back because that payment is worthwhile to me. I want to find ways to pay a little less in terms of lost time and nervous system overload, a different goal than trying to avoid it entirely. If I wanted to avoid the frustration of bad days and uncomfortable experiences I’d need to limit my life pretty extremely, which seems a much bigger price to pay than spending time recovering from doing the things I want to do.
Featured Image is Connie – the CONvergence mascot!