Yakety Yak: Learning to Talk about CP

It's no secret to most that I enjoy conversation and talking in general. When it comes to Cerebral Palsy, talking about it is a learning experience. I want to tell you what it's like for me day-to-day, but doing that requires next level vulnerability and disentanglement. 

Many people have made assumptions about my CP and I have had to overcome those assumptions for as long as I can remember. It's not just that people assumed that I couldn't do things, it's also the instances where I lived and believed those assumptions. 

Take, for instance, my desire to go to art school in high school because I wouldn't have to go to gym class anymore. I wanted my CP to be invisible and be a non-factor. A lot of people around me helped me with that by not “seeing me like that.” In a way they were doing what I wanted and in another way they weren't really seeing me.

High school was a long time ago, but invisible things happen every day that create challenges for me that most around me don't see or take into account. Some have said, “tell us if we can do something differently.” Most don't say that. And, if I called out every challenge, every day, I'd be doing it all day long at work and at home.

I'm still learning how to talk about life with CP. I've taken queues from two of my favorite disability authors, both of whom have climbed Mount Kilimanjaro. Bonner Paddock, also has CP, and he wrote One More Step documenting the climb. Tiffany Yu is a disability advocate and recently published the Anti-Ableist Manifesto. I think everyone who knows me on a personal level would benefit from reading these books. I'd also potentially benefit if you read them.

It's hard to talk about my daily life with CP because I know from experience that most people I encounter are at least a little uncomfortable going there. Maybe that's well intentioned because they don't want to say anything offensive. But, more often than not, my experience is that people just don't think about the fact that I may have to function differently from them. 

This happens in every area of my life. It's not only strangers who do or more often don't do things that make challenges for me. It's in everyday experiences. For example, several weeks ago, I assembled some IKEA furniture and it took a lot of hours and every ounce of energy I had. I vocalized that, but sometimes that's not enough to convey the actual depth of impact. Six or so hours of furniture assembly took me roughly four days to physically recover from, and I had to take pain medicine (which I prefer not to do). 

In a scenario like that, sometimes people will decide that I can't do something like that or that they shouldn't ask, or worse, they'll defer to someone else to do it. I'm all for having help, as long as it's my choice. I'm still human and sometimes I get insulted when I get overlooked to do things that I can do – even if they're harder for me. 

Arguably, I'd compare the human interactions of living with a disability to the way adults tend to treat children. What I mean is that people are more likely to make decisions for me and step in because they don't think I'm capable. But, if you don't ask me then it's an assumption on your part. And then, there's variability to it. Sometimes I'm up for the physical project and sometimes I'm in too much discomfort to do anything. For me, that means I need you to ask every time and recognize that my answer is changing based on things you can't see. I've noticed that it can be frustrating for people to do that because they don't want to ask every time. 

As a result, I've spent decades advocating for my needs. Sometimes I do that well, sometimes I don't do it at all, and sometimes I get frustrated because I don't feel heard. Frankly, I have an easier time talking about the challenges that I face with my Cerebral Palsy with total strangers than I do expressing it to the people I see every day.