The Shape of You / Without Me

I cannot change my physical limitations. I can manage them and work to hold off new ones, but my Cerebral Palsy is like an environment, it's there no matter what I do. That's okay with me. What is challenging is when I can't do what you can do, when I can't meet your expectations, and when I can't do things the way I used to do them. 

I can read over a hundred emails a day and frequently do, but it's probably a safe bet that it takes me longer than someone who doesn't have vision limitations. I know that it's preferable to respond to people quickly. It's safe to say pushing myself to keep up with any technological demand contributed to the carpal tunnel I developed a few years ago. 

My eyesight gets a little worse every year. I'm legally blind without prescription eyewear. I can read things faster on my phone than on a computer (I think because the smaller screen concentrates my vision and because it's closer to my face), but if I do that too much, my arm starts to hurt (it hurts most of the time). Carpal tunnel surgery improved the pain levels, but it didn't eliminate them, and I've modified most of my activities that cause that pain. For instance, I typed this issue of CP and Intersectionality with a touch screen and a stylus. 

I use various tools to help me do things with the written word. I use handwriting with OCR recognition to write notes, songs, and even blog posts. Unfortunately, there's usually a lot of time spent correcting the transmissions. After I injured my dominant hand (something I've talked about in prior posts), I had to learn how to write a second time, and my handwriting is not great. It's okay if I slow down when I write, but that takes a lot of intentionality and is counter intuitive when I'm trying to meet a deadline. 

I also use speech to text to write longer pieces. I use text to speech to speed up my reading with immersion reading. I don't use generative AI (at least willingly) because my highest values are voice, choice, and autonomy. And, for me, AI is just another way for something other than me to tell my stories. 

I want to be the fastest reader in the room, but the odds aren't in my favor there. I want to have the handwriting I used to have because it was better once upon a time ago. I want to see well enough to drive a car so I never have to explain why that doesn't impact my ability to do my job at a high level, and so I never have to feel like someone's burden. It's frustrating to me that the price of Uber keeps going up (they don't do disability discounts, besides they'd probably take that out of the driver's cut, who already gets less than half of what I pay for it). Those price hikes necessitate that I use public transportation more and that's both a time and energy burden. 

“September, sad and softly 

Leaves are starting to fall” 

 – (The Shape of You, Jewel)

CP is “like a treasure that travels with me down every road” (Jewel). It's partly the canvas that my life is painted on. It's there when I wake up and make sure I have my balance before I take my first step each morning. It's there when my kids or anyone else ask me to do something that I have to say “no” to because I can't do it. It's there when religious people want to pray it away like it's a bad thing. It's there when I have to prove myself because of it. It's there when I do stretches that don't feel like I did them an hour later. It's there when people say things like, they're “walking like me.” 

“Now, this looks like a job for me, so everybody just follow me, because we need a little controversy” (Eminem, Without Me). 

My CP isn't the controversy or the problem, it's the fact that I have to be in overdrive all the time to live an average life. I'm not choosing to do less than you. In fact, sometimes I'm choosing to do more than you (except on the weekends – I'm not in my twenties anymore). What if I allowed myself to take time off without feeling like it was just going to put me further behind? What if I offered myself a kind and supportive word? What if my confidence didn't come across like an angry brag? 

Being disabled doesn't make me any less human than anyone else. I still get in my head about questions like the ones above but, “straight up, now, tell me “ what kind of expectations do you wrestle with and are there things that you used to do that you have to modify now? Fun fact, over the last year, I've written over 40,000 words on my lived experience. Thanks for coming along for the ride!