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A few years ago, my friend, Taylor, and I sat down to talk–and ultimately laugh–about what we might have in common as people with invisible disabilities that affect how we think and process and organize and emote. For today’s episode, I excerpted the highlights of our conversation that had been published in an hour-long episode in 2014.
One technical note: we talk about executive function in the show. This podcast is deliberately not medical, so I wanna explain it here for context. Executive function is like the captain of the ship if your brain were a ship. It’s not that the captain does every task to make a ship do shiply things, but they are in charge of everyone who’s doing their own tasks. And ultimately, they call the shots and change which shots they call in a split second if the situation warrants it. And then, I’m guessing they have to remember which shots they did and did not call so everything proceeds how it should on your ship.
If you have an impairment in your executive function, you might steer your brain ship onto the rocks, get lost while walking from one end of the ship to another, tell the crew the wrong instructions or in the wrong order, forget which orders you’ve given or not, scream at the crew over basically nothing, and not even realize you’re doing these things. Ouch. Sounds like me just a few years ago but without the ship.
Transcript
Pigeonhole Episode 14
[bright ambient music]
CHORUS OF VOICES: Pigeonholed, pigeonhole, pigeonhole, pigeonhole, pigeonhole, pigeonhole, pigeonhole, pigeonhole.
CHERYL: This is an encore presentation of a conversation with my friend, Taylor. In the original, we talked a lot about what we share in common, me as someone with some brain injury disabilities and her with ADD. In this shortened version, it’s much more Taylor’s story. And my attempt, at the very end of the episode, to show her how much we have in common…until I forget what I’m talking about. Which we have in common. Enjoy.
TAYLOR: I do have some ADD-related jokes. How many ADD kids does it take to change a light bulb? Let’s go ride bikes.
TAYLOR and CHERYL: [laugh]
TAYLOR: That’s the only one I have, actually.
BOTH: [laugh] [goofy, bouncy music break]
CHERYL: Well, hello, Taylor.
TAYLOR: Hello.
CHERYL: So, I invited you with absolutely no plan. And generally that’s just a terrible idea for me. Does that work for you?
TAYLOR: Maybe? You see, I waffle back and forth on no plan versus every minute planned out. Sometimes it works out really well for me to have my day planned out to the minute, and some days that stresses me out. [laughs] I make a plan, and sometimes I follow it. And sometimes it just poof.
CHERYL: And are you really that easy-going about it as you seem right now?
TAYLOR: No. [laughs] No, not at all!
[upbeat piano music break]
TAYLOR: A lot of people are surprised when I tell them I have ADD. I actually had a professor tell me once—in a pottery class, so of course I was hyper-focusing ‘cause I was really into it—I had a professor tell me, “No! You don’t have ADD. No way. You can focus. You’re not hyper at all.” There are so many different facets to this disorder. And it was so frustrating, and it was really insulting. It was incredibly insulting. I tell some of my friends I have ADD, and some of them say, “Wow, yeah. That explains a lot.” And some of them say, “Really? That’s weird.”
CHERYL: If I had a dime for every person who told me I didn’t have a brain injury, I would have so many dimes. I would just be swimming in dimes. And I think that….
TAYLOR: [chuckles]
CHERYL: There’s a classic brain-injured person trying to make an interesting metaphor: I’d have so many dimes, I’d be swimming in dimes.
TAYLOR: [laughs]
CHERYL: I think most people would say something like “If I had a dime for every time someone said that, I’d own a mansion!” No, not me. I would just have a lot of dimes. We may be off topic. Well, you can’t be off topic if you didn’t have a topic, right?
TAYLOR: Off Topic: ADD and How It Has Affected My Life. [laughs] Or like Off Topic: The Story of My Life. That’d be a great book title!
CHERYL: I think that people say things like “You don’t have ADD. You don’t have a brain injury,” I think they are trying to give a compliment.
TAYLOR: Yeah. Why does it have to be considered different and strange and undesirable? And there’s such a range of ability regardless of a person’s diagnosis or label, that it seems silly not to accept it. And it seems close-minded.
CHERYL: Why do we get the bad rap? Tell me. Why do we get the bad rap? I will give you a dime if you can tell me why we get the bad rap!
BOTH: [laugh]
TAYLOR: [sighs] I wish I could earn that dime. [laughs]
CHERYL: Well, you have a disability, so you can’t. That’s why!
BOTH: [laugh]
CHERYL: If you didn’t have a disability, you’d be earning buckets of dimes all the time.
TAYLOR: I’m sure.
CHERYL: Yeah, I hear that’s what non-disabled life is like.
TAYLOR: Just throw money.
CHERYL: People just leave the house, and money just comes to them…just by virtue of being non-disabled. And white and straight.
TAYLOR: Mmhmm.
CHERYL: Male helps.
TAYLOR: Yes.
[jaunty synthesizer and voice music break plays under the next paragraph]
TAYLOR: I used to say, “Oh, I have ADD, but I’m this other person.” It was separate from me. And I didn’t embrace it. It is part of me. It shaped who I am. My confidence in myself has shot through the roof since I started embracing [chuckling] that I have ADD. I have started calling it executive functioning disorder because it affects so many other things. It’s a much broader disability than just attention, and people don’t understand that. So, I quit feeling like I had something to hide or that there was a part of me that I didn’t want to embrace. There’re a lot of people who say, “I had ADD.” That, that kills me. “I had ADD when I was younger.” Ok, so what are you saying, that I should’ve grown out of it by now?
CHERYL: That is what they’re saying.
TAYLOR: Yeah, it is.
CHERYL: I overcame it. Why didn’t you?
TAYLOR: Or maybe you didn’t overcome it. You just don’t recognize that all of the coping mechanisms you put in place work so well that it doesn’t impact your life anymore in the same way that it impacts mine. One of my favorite things to say lately, not even related to disability at all, is, “You don’t know my life.” But I feel like it totally applies. So, don’t tell me how I should have been living it or how I should go on living it. That is a ridiculous standard for you to hold me to. [chuckles] I think that people are trying to relate to what is strange to them. That’s part of the human experience. We want to relate to people. We want to find some commonalities, but if you can’t find— Find something else you have in common! Yeah. You don’t know my life!
[weird, distorted electronica music plays under next question and answer]
CHERYL: I’ve heard people in other places ask the question, “If you could get rid of your disability, would you?”
TAYLOR: Mm, I don’t think I would. [chuckles] I really don’t think I would. I think that sometimes it’s a lot of fun, and sometimes it is really frustrating. But sometimes I’m able to hyper-focus on a lot of things. I’m not able to focus on a lot of things. But when I can hyper-focus, I get jobs done. I’m really good at them. If I got rid of my ADD, I wouldn’t be who I am ‘cause it’s such an intrinsic part of me. And I like who I am. I don’t wanna be a different person.
CHERYL: One of the really neat things I’ve found in talking to you is that I really hear a lot of overlap in the way you describe what’s challenging for you, what you like about yourself, and I think there was a third item in the list, but I don’t remember what it was. Which, you may also relate to as well.
TAYLOR: [laughs]
BOTH: [laugh]
[upbeat theme music]
CHERYL: Every episode is transcribed. Links, guest info, and transcripts are all at www.whoamitostopit.com, my disability arts blog. I’m Cheryl, and…
TWO VOICES: this is Pigeonhole.
CHERYL: Pigeonhole: Don’t sit where society puts you.
[bright ambient music]
Music in the episode: “Catatronic,” “Heavin On Earth,” “Sandwork,” and “The Spidrmans” by UncleBibby. (Source: freemusicarchive.org. All are licensed under a Attribution License.)
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