I debated writing a post like this for a while because I know that I still have a lot to learn in life, but then I thought we’re always going to be learning. I wanted to write this because these are the things I wish someone had told me about living with a disability at 12, or 13, things I hope other people, especially young women with disabilities will take to heart now. Here are 4 things I wish I learned sooner about living life with a disability.
Dear Teenage Kimberly
I know dealing with Cerebral Palsy can be difficult and beyond frustrating sometimes, but in 10 years although you’ll have more of those times, you’ll also have some great memories that wouldn’t have happened if not for the Cerebral Palsy. I know you can think of a few already. I’m writing because even though you’ve been living life with this disability your whole life, and learned quite a bit, there are things you won’t know until sadly you experience them and although it’s hard to accept that, it’s okay. I mean they do say there’s no substitute for experience for a reason. Nonetheless, there are some things I’d like to share with you.
You’re Disability Doesn’t Define You, You Are Worth So Much More
The looks and questions you get about your disability will probably always happen, so get used and laugh about it when you can. People can see you sitting in your wheelchair and that’s all you am a person who uses a wheelchair, you cease to be a woman who likes to hang out with friends, go to the movies (when that was actually a thing), someone who is capable of working and so many other things.
You are those things though. You may be sitting in a wheelchair, but your disability doesn’t define you. There will be times when you have to adjust plans or take an extra step or two to complete a task probably more often than you’d like, but that doesn’t mean you should do something. You are not defined by your disability, it is part of your story not all of it. You are worth so much more than the simple label of a disability, you deserve happiness and all the amazing things life has to offer just like anyone else. These things may be harder to achieve at times, but remember, you are worth it.
Know When To Listen To Your Body & Accept Your Limitations
Would you believe me if I said that even though I’m telling you this, I still struggle with it? I know you like to be independent and that’s fine, that drive to do things on your own will serve you well in the future, but find a balance. You can still do things on your own and practice to make things easier, but if you want to take a break in the middle of a task do, if you want to do half of it yourself and ask for help afterward that’s okay too.
You are disabled yes, it doesn’t define you, yes, but sometimes it will change the way you do things and that is okay. There will be times when your disability keeps you from doing something as well and it will be disappointing when those times come, but that will be okay too. Accepting the limitations of your disability means that you know what you can handle and what you can’t. It’s okay to keep working at something or try something new, but also know it’s okay to say “I can’t do this right now or I’m tired, or I need help with this”. Be careful not to do that so often though that you stop doing things for your self.
You Have People Around To Help You, But Don’t Let That Stop You From Trying Things Out On Your Own
Don’t get complacent. This might be the most important aspect of living with a disability, but it might also be the most difficult. You have people around to help you and it’s fine to accept that help as I said previously, but find a balance of also learning to do as much as possible for yourself or as much as the Cerebral Palsy lets you. It will serve you well when you get older.
Remember when a few years ago when you were having trouble doing something because of fine motor skill issues and you said ”I can’t do it” and you were okay saying that, essentially giving up. Do you remember what mom said? She sat you down and said “Okay, but you’ll never know unless you really try. You can sit here and be okay with it, but one day, everyone is going to be out there living their lives. What are you going to be doing? You hated it at the time, but you knew she was right and it was something that has a huge impact and drives you to try new things. Don’t lose that drive, it will lead to great experiences and countless laughs with your friends.
There are days when this will be harder than others I know you know that already, but be careful not to throw in the towel before you figure out if you really won’t be able something or if you need to make it adaptive or ask for help. Believe in yourself, you never know what might happen when you do.
Learn Another Language Or Two
You’re taking a language in school, stick with it. You’ve always wanted to be multilingual, lean into that, and study the languages on your list. Learning a language on your list will be a fun way to learn about the culture of another country too, but more importantly, it will serve you well especially when it comes time to look for jobs. Writing this letter to you I can tell you that you didn’t end up doing that, but I intend to so that maybe in the next decade I’ll be multilingual.
Now back to you… Like it or not, it’s going to be difficult for you to get a job. The job market is tough for anyone, but sadly it will be tougher for you because you have a visible disability. It’s unfair I know, but there are things you can do to make yourself a better candidate for a job and who knows maybe one day you’ll land an internship that will lead you on a completely different path, you’ll see
One More Thing
I wish I could say that living with a disability gets easier, but it doesn’t. However, I cam say that as you get older you get to know yourself better, know who you are, and things you do and don’t want to surround yourself with. This makes living with the disability easier. One other thing, don’t worry so much if you don’t have your life plan figured out that’s okay, go out into the world, volunteer, do internships, network, be open to experiences, you’d be surprised at where that can lead you as well as the connections you make along the way.
Remember, in the worlds of Brad Paisley, “these are nowhere near the best years of your life”. Honestly, I’ve had some pretty great ones, but I know there is still so much more to come. Have fun, be safe, and see you in the mirror someday.
Love mid 20’s Kimberly