6 THINGS YOU WANT TO KNOW ABOUT MY CEREBRAL PALSY BUT ARE TOO AFRAID TO ASK

by Erin Kelly*

When I was about a year old, I was diagnosed with cerebral palsy.

I don’t know much about the day I came into the world or what caused my cerebral palsy because I’m adopted. I was born on the streets of Seoul, South Korea, presumably without proper prenatal care. Someone, who I’m assuming was my birth mother, had enough sense to drop me off at a police station with a note that read: “Please adopt her to a family that can raise her.”

A few months later, I joined my very large family in America. I was almost 11 months old.

Upon my arrival, my parents slowly went down the line of people in my family, explaining my disability. Eventually, everyone in my life knew about it. Some people were more accepting than others at first, but eventually they all came around. But still, they all had assumptions and questions they were too afraid to ask — like, “What exactly does Erin have?”

When I meet new people, I know they have questions about my life. Often, they’re too afraid to ask them. So today, I’m going to answer them.

In fact, I think this has been the story of my life so far: helping others get to a point where they realize that a disability isn’t something to fear or stay quiet about.

Here are six things you probably want to know about my cerebral palsy but are too afraid to ask:

1. How does your disability affect your everyday life?

CP is a condition that can affect everything from brain function to motor skills. I use a wheelchair because my legs aren’t strong enough to carry me.

CP affects every aspect of my day-to-day existence, from getting out of bed in the morning to getting in the car to go somewhere. But while there are a lot of things I‘m not able to do independently, my CP has never stopped me from trying to do things “the Erin way” before asking for help, regardless of how much time or energy it takes. Writing is something I can do completely on my own — and that’s been a gift that literally keeps on giving.

Cerebralpalsyarticle1.jpg

2. Has having a disability made your life harder?

Yes. But believe it or not, it’s also been an advantage. I learned a long time ago that if I was going to get anywhere in life, I needed to come to terms with what I have. I know this is something that will always be a part of me, so I’ve found ways to turn it into positive energy — mainly through my writing. When I let go of all the negative thoughts and hardships that come with being disabled, I was able to let the power of words and writing set me free.

I started writing at a very young age, out of a personal reaction to my situation. My CP made it difficult for others to understand me when I spoke — and it still does, to a degree. I just wrote how I felt and people slowly started to respond to that. In turn, it eventually let them know that it’s OK to be honest about disability. I’ve used that energy to build a platform where I can now share my thoughts with the world and help people to feel more comfortable around others with disabilities.

3. Can you die from cerebral palsy?

I get asked this a lot, and thankfully, the answer is no. I’m incredibly fortunate that my diagnosis of CP isn’t as bad as it could have been. This is a disability that can be caused by a lot of factors, like a lack of oxygen and/or prenatal care, as is likely in my case. But for other folks, CP can present itself in different ways, from something as small as a limp to something as severe as brain damage from a car accident. For me, the silver lining in all of this is that while there’s a laundry list of characteristics and contributing factors that can end up being fatal, the disability itself is not.

4. Is CP contagious?

This is another question I’m asked a lot. The good news is the answer is still no.

5. Are there any perks to living with CP?

If I had to pull something positive from this, it would be that I’m grateful for kind and generous people who let me go in front of them in long lines, and free admission at my local movie theater — even though they did away with that perk a while ago. It was fun while it lasted.

6. Do you ever get tired of living with a disability?

Yes. But I‘ve learned to put my time and energy into things that truly matter. I can’t fight every fight there is or solve all the world’s problems. Some battles aren’t mine to fight, but CP is my battle to fight. I’m grateful that my life will leave some kind of impact for people who meet me and read my stories.

As a wise man once told me: “Everyone has a disability. Some you see, others you can’t.”

It’s easy to stop asking questions and let your own fear and assumptions form your opinion of someone or something that’s different, like me.

But please, keep asking questions. Throw away your assumptions. Look at me for my abilities, not my disabilities.

* Erin Kelly is a  writer whose work has been featured in The Huffington Post, The Good Men Project, Wordgathering Poetry Journal, XoJane, and Oberon Magazine. This article is published with permission of Mycarespace. Mycarespace is a free online directory. It connects people with disabilities, carers and families to over 5000 local services, NDIS providers and activities.