Most people take spontaneity for granted. The last-minute road trip, the casual “Want to grab lunch?” The unplanned coffee run after work. To many, these small, carefree moments are moments of freedom and fun. But for me, and so many other disabled people, spontaneity is something that rarely fits into our world.
Being disabled means every outing, every activity, and every decision requires planning. You can’t just get in the car or take a walk. Accessibility, medical needs, weather, support, and equipment are just a few of the many factors that have to be considered before leaving the house.
The questions seem to never end: Is the location wheelchair accessible? Are there stairs? Is the bathroom accessible? Does the elevator work? Will I need help, finding seating, or navigating the space? Is the staff accommodating?
I ask lots of questions. They’re not about comfort. They’re about access and maintaining dignity. No outing is carefree or simple.
These questions aren’t just limited to public places. If someone invites me to their house, I can’t automatically say yes. I have to ask them about the accessibility of their home. If there are more than a few stairs, I can’t visit. Being carried is uncomfortable and embarrassing for me. It could also be dangerous.
Personal hygiene is another concern. Most bathrooms aren’t accessible to me, which means limiting my fluid intake. If I refuse a drink at a guest’s house, I’m not being impolite. Fitting into small bathrooms is often difficult, if not impossible for me.
Spontaneity doesn’t really exist when you are disabled. I have to make sure I have enough medications. I have to schedule medical appointments weeks if not months, in advance, and I have to make sure a family member or my personal care assistant can take me where I want to go. I can’t go to a movie or a new restaurant at the last minute.
Even if I desperately want to say yes, my body might say no. Spasticity and pain often leave me fatigued. After physical therapy for example, I’m too tired to do anything else.
When it comes to even the most routine tasks, I use much more energy than my nondisabled peers. According to the American Academy for Cerebral Palsy and Developmental Medicine, due to the way cerebral palsy affects the way people move, people who have cerebral palsy may have to use 3 to 5 times more energy to perform the same amount of work as their peers in terms of effort, persistence, muscle control, and concentration. Even at rest, people with CP have to work hard.
This doesn’t mean I don’t enjoy life. I do. I just enjoy it differently. I have to plan, be prepared, and know what works for me. I still see my friends and family, try new things, and travel when I can, but not without a plan.
So when someone says, “You should be more spontaneous,” or “Come on, just do it,” I don’t get frustrated. However, I wish people understood that planning is just part of my life. If I don’t want to go somewhere, please respect my decision.
Spontaneity, for many people, represents joy. For many disabled people, it’s a risk. It doesn’t mean we never get to enjoy a last-minute activity, but it does mean we approach it differently, carefully, and thoughtfully. Until the world is more accessible, spontaneity, for many disabled people, will remain a luxury, not a given.
Source:
Cerebral Palsy AND Post-Impairment Syndrome.” Edited by Gina Jansheski, Cerebral Palsy Guidance, Cerebral Palsy Guidance, 28. April, 2025, http://www.cerebralpalsyguidance.com/cerebral-palsy/associated-disorders/post-impairment-syndrome/.