So, if you need some buy in to the authenticity of the narrator, here’s the low down: 

1. I studied disability in school, back when I was a young, healthy, seemingly on top of the world student. It was great. Opened my eyes to seeing the world through a different lens. It actually was mind opening much like Gender Studies in high school, and was super helpful for when I became disabled to put my academic knowledge with the practical. Like I knew, academically (aka bc I read it in my fancy textbooks), people would tend to make things harder for themselves just to look less disabled. I totally get that. For years I would just walk along walls, sliding on an angle to move rather than get my walker. Just the weirdo who likes walls. For years I didn’t get a wheelchair because that just seemed more “disabled-looking” than my walker. I would say, “Self, you know this is just your ego.” Sometimes, that would help and I would set my ego aside and use whatever tool was best and saved me more energy. Sometimes, it was just good to know I was letting my ego win. (btw, I love my wheelchair. I named her Carmen San Dieago and she is probably the second most brilliant thing I’ve done for myself aside from getting my dog, but it took many discussions with my disabilities college professor till I actually bothered to get her–the chair, not the dog).

2. No one really has a clear answer for my “ailment”. So, I’m left without a “support group” that I can join to also share in my victories or wallow with me. I call my mom and tell her, “Can you just say, wow, that sucks and has to be so hard?” while I whine for a moment and she is great and does. But I don’t like to wallow much. Usually, that one “Wow” from my mom is enough. Largely I live in an optimistic mindset. I can laugh at myself and can be thankful for the on-offness of my situation. While unexpected “on”s are hard, awkward and really change how I have to approach a day, there are plenty of “off” days that get sprinkled in.

Mostly I have a handful of great cheerleaders, but, as most are not in the same boat, they may not really get the full extent of my experience. I love them all and they make my world easier but sometimes I wonder what it would be like if I could be like, “Wow! This is what I have! These people have it too! They know what it is like and what it will look like over time!” I even one time tried to join up with a group that had very similar characteristics and the “owner” of the group said, it is only for people who have a positive diagnosis. Kicked out. Not cool enough to join that cripple club. 

3. While I was in a Women and Disability class, we talked about identities, how you define yourself for the groups you belong in…“Sister, Mother… etc.” what word? Same goes in the LGBTQ community… what word (if you belong to that group)? Well, I like the word cripple. I don’t exactly know why but I do and I’m claiming it. And you know what? I can. 

I call myself a part-time cripple because Sherman Alexie wrote the book, “Diary of a Part-time Indian” and it made so much sense to me. Identities you have to live with that sometimes are “on” and sometimes not. I mean, there was way more to that story, but I found a connection in that way, years later anyways. So, because my situation sometimes happens and sometimes doesn’t, I consider myself part-time. Some days I wake up and my legs don’t work, some days they do. Some days I present as totally able-bodied, some days I don’t. That’s just the easy visual. The sensory-muscle-spasm-shit-show is it’s own lovely cup of tea and is also a “sometimes on” “sometimes off” but at least most of the time, I know why and I always know when that’s coming on.

So there there you go. You can write your next college paper on whether I am, or am not an authentic-believable narrator.