Disability and Determination is a weekly newsletter about my experience living with a rare disability…with a little bit of meditation, pop culture, and other random things thrown in. If you like this post, give me a like with the ❤️ symbol below. This will help me get discovered by others on Substack. Drop your email in the field at the bottom and click the Subscribe button to be notified of future posts, or if you want to contribute, I offer a paid subscription option (that includes extra monthly content), or you can Buy Me a Coffee ☕
As a person living with a disability, I’ve often found it hard to differentiate between what I’m fearful of doing and what’s just pure hesitation based on the lack of accessibility I often face. “Fear” is the other big f-word in my life.
I think it’s probably a little bit of both. There’s no doubt I have anxiety and leaving the house for any reason always ramps that up. Some of that is because I catastrophize and assume the worst could happen, but a lot of it is not knowing what challenges I’m going to face. What if I fall? What if there’s no disabled parking spots available? What if I overdo it and hurt myself? What if there are stairs or a curb? What if someone questions me about my disability or makes some dumbass comment?
A lot of times, things work out and I’m glad I did something. But there’s plenty of times where they don’t. Where I live now especially, I have a really hard time finding disabled spots. Partially because I live around a lot of seniors but also partially because I live around a large number of entitled asshats. I’ve also been in 4 car accidents that weren’t my fault and that fear never fully leaves you when you get in a car (see aforementioned comment about entitled asshats). Unfortunately, those are the times that stand out for me most.
Those moments build over the years and so does the pit I get in my stomach every time I have to do something where there’s even the slightest bit of unknown—even sometimes when I know exactly where I’m going and what I doing. It makes it more difficult to figure out how much I’m letting the fear hold me back and how much of my hesitation is valid. It’s ok to not be up for doing things sometimes. I feel like I’m flaky sometimes when in reality, I just don’t always have the mental and physical energy to tackle certain things. Sometimes I just don’t want to have to deal with the anxiety that comes with going out either.
I know I’ve missed out on some things that way and that really gets at me sometimes. I know I could be carpe-ing the diem more. I also know that this isn’t all my fault. Yes, I’m the one with the fear and anxiety and the choice to go out or not, but I’m not the one who created the lack of accessibility. I’m not the one who chooses to fall and sometimes can’t find someone to help me up if I’m by myself. I’m not the one who didn’t create enough disabled spots or causes people to abuse them.
This whole “am I afraid?” or “is this valid?” inner argument plagues me a lot in many areas of my life. I think maybe I’m asking the wrong questions though. I think, actually, it’s not even helpful to ask myself those questions. No, I don’t want to let myself get too held back, but I also think I need to stop putting the onus only on myself for living in a world that’s not accessible and is sometimes, just not helpful either. Two things can be true. I can have some fear that I need to overcome, but that doesn’t make that invalid. The fear comes from experience and those experiences are valid too.
At the end of the day, the only one who needs to be happy with their life is me…is us. If I don’t want to do something, I don’t have to guilt myself into doing it. I’m tired of my never-ending list of “shoulds” I inflict on myself. I don’t need to be going out all the time to feel like I have a full life. My social media feed doesn’t need to echo those of other people. It all just needs to be enough for me.
So I think the better question to ask myself is, what am I going to do today that will bring me joy (even if that doesn’t involve going anywhere)?
What Made Me Happy This Week 🌞💞
Good Bad Things (🎬) - This was well worth the $19 I paid to watch the live stream premiere last weekend. Written by Danny Kurtzman (who is the male lead in the movie) and Shane D. Stanger, it’s a beautiful and real movie that features a lead actor with a disability—muscular dystrophy like me, in fact. To quote the IMDB description: “an entrepreneur with a physical disability reluctantly tries a dating app, leading him on a profound journey of love and self-discovery.” I hope we see more and more movies like this because all stories are worth being told. Representation matters.
Sam Palladio - The Perfect Summer’s Day, Before We Lost the Light (🎵) - If you also enjoyed the TV show, Nashville, then you’ll know Sam who played Gunner. One of my favorite things about that show was the music. I was lucky enough to be able to go to a show at The Bluebird in Nashville which is prominently featured in the show and one of the performers had written some songs for Sam on the show. His album is a lovely blend of ballads, pop, rock and dance. Here’s the video for one of his songs:
Fall is here! 🍂 - Though you wouldn’t know it based on the 90 degree temps we’ve had this week, fall is my absolute time of year. I don’t like pumpkin or Halloween so you’re probably wondering why this is my favorite season, but I love the intro to the holidays and the cooler weather (which is coming according to the forecast). I love putting on a cozy sweater, drinking tea and reading on the couch. My body also fares far better in the cooler weather.
Happy weekend everyone ❤️
It's a challenging balance between preparing for disaster and anticipating it. And I'm sorry entitled asshats are taking advantage of what you need, Jackie. Hopefully, they'll have the day they deserve. xo