Timesuck: disability edition

Content warnings: skinpicking, mention of eating disorder

 

This might not be interesting to other people, I’m not sure, but I wanted to track and annotate how much time I spend on being disabled each week. See, I’m not sure abled people understand the timesuck that can happen with disabling conditions (and with navigating ableism). For this experiment, I didn’t include activities that were optional such as disability advocacy, but moreso things that I either can’t avoid at all or would put my health at risk to not do.

The total week came to 32 hours and 25 minutes, although most of that was the extra sleep I require (this is a combination of bipolar management and meds side effects) and the extra time transit takes compared to if I was able to drive. Here is the week’s totals broken down:

Extra sleep: 18 hours. I compared to a healthy person’s potential eight hours, although adult average is apparently more like seven. I didn’t track this down to five minute increments since it’s hard to tell exactly when I fall asleep, but instead approximated, often rounding down. Certainly there are tons of abled people who would love to sleep as much as I do, but for me it’s necessary, and not necessarily enjoyable.

Extra transit: 7 hours and 25 minutes. I compared my actual walk/bus/train trips with Google’s estimates of driving times. This is an example of another thing I do that some abled people do as well, it’s just that I literally can’t avoid it due to disability. I am so not capable of driving, even if I had the money for it. It’s part of my experience of being autistic.

Treatment: 5 hours and 30 minutes. This includes appointments, pharmacy, transit for those, taking meds, and symptom tracking. I’m also technically supposed to go to group therapy two hours a week but haven’t been doing that lately, which is probably unwise.

Communication supports: 1 hour. This was time spent preprogramming my device for upcoming activities (see my posts about AAC here). I didn’t count the extra amount of time any given conversation takes when I’m typing, as I had no real way of estimating the difference from conversations where I speak or sign the whole time.

Actively engaging in behavioral symptoms: only 35 minutes, yay! This week all of which was devoted to skinpicking. I used to spend 30+ minutes/day on that alone, but have been doing much better on all obsessive-compulsive spectrum symptoms lately. The total amount of time I spend on symptoms can be much higher during bipolar episodes, and almost automatically goes up to 4+ hours/day during acute eating disorder relapses. I decided not to count engaging in special interest stuff under this category even though that’s technically a “symptom” of autism, because for me it feels like mostly a positive autistic trait – it enriches my life rather than takes away from it.

Coordinating benefits/accommodations: 15 minutes. There are definitely weeks this takes an hour or much, much more. Nothing like being your own primary case manager.

Okay, given, I don’t have the spoons (spoon theory) necessary to actually work for 32 hours/week, but in theory look at all the time I could direct towards productivity if I was able! I would be much less poor. Or not to mention life would certainly be more fun if I could spend that time on crafts or special interests. I often resent the amount of sleep especially – can you imagine having 18 more hours a week than you have available right now to do whatever you wanted with? In truth, I can only barely imagine it. I have been living with my disabilities for so long that making this list was somewhat surprising. Advocates do frequently point out that being disabled (and poor, too) is a full time job, but I wasn’t sure before this data collection whether my own experience added up to that. It certainly got close!

Well, I don’t know if you found this as interesting as I did, heh, but maybe it gave you new insight into one disabled life. If you’re disabled and have ever done a tracking project along these lines, I’d love to hear about it! Feel free to comment below.

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