6 things you wanted to know about my cerebral palsy but were too afraid to ask.

When I meet new people, I know they have questions about my life. But all too often, they’re too afraid to ask them.

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.


My family! All photos from me, used with permission.

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.

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.

Me with the book I wrote.

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.

More

Whenever someone's words or behavior are called out as racist, a few predictable responses always follow. One is to see the word "racist" as a vicious personal attack. Two is to vehemently deny that whatever was said or done was racist. And three is to pull out the dictionary definition of racism to prove that the words or behavior weren't racist.

Honestly, as soon as someone refers to the dictionary when discussing racism, it's clear that person has never delved deeply into trying to understand racism. It's a big old red flag, every time.

I'm not an expert on race relations, but I've spent many years learning from people who are. And I've learned that the reality of racism is nuanced and complex, and resorting to a short dictionary definition completely ignores that fact. The dictionary can't include all of the ways racism manifests in individuals and society, and the limitations of dictionary definitions make it a poor tool for discussing the topic.

Since "racism" is such a loaded term for many people, let's look at such limitations through a different complex word. Let's take "anxiety." According to Merriam-Webster, "anxiety" is defined as "apprehensive uneasiness or nervousness, usually over an impending or anticipated ill."

Now imagine thinking that you understand everything that encompasses anxiety from reading that dictionary definition. Imagine thinking you could recognize the signs of anxiety in someone based on that definition alone. Ridiculous, right? The dictionary doesn't explain that some people's anxiety manifests as anger, even though it does. It doesn't say that anxiety sometimes manifests as withdrawal or aloofness. It doesn't say that you often won't see obvious signs of fear or nervousness in someone experiencing anxiety.

The dictionary doesn't offer anything close to the reality of what anxiety is or looks like. It would be silly to say that someone isn't experiencing anxiety because they're not clearly showing signs of nervousness like the dictionary definition implies. Just as the dictionary definition of anxiety is not comprehensive, neither is the dictionary definition of racism. Yet people keep using it to "prove" that something or someone isn't racist.

Fox News analyst Brit Hume just pulled that trick on Twitter to try to back up his claim that Donald Trump's "go back to" statements to four Congresswomen of color weren't technically racist.


The first Merriam-Webster entry for "racism" reads "a belief that race is the primary determinant of human traits and capacities and that racial differences produce an inherent superiority of a particular race."

Merriam-Webster

First of all, I'm not sure how this definition actually makes Trump's statements not racist. A belief is not always conscious, so even assuming that his racism is unconscious, a white man telling four women of color to "go back to" their countries of origin—despite three of them being born in the U.S. and the fourth being a naturalized citizen of the U.S.—is pretty objectively racist. No one knows exactly what is going on in the President's head, but such statements only being made to women of color would certainly be consistent with the behavior of someone with a belief in white people's inherent superiority.

But that simple definition isn't truly definitive, either. Shortly after Hume's tweet, Merriam-Webster pointed out a usage note for the word "racism," which clarifies that dictionaries do not provide the be-all-end-all definition of words.

Anti-racism advocates have tried time and time again to explain that racism is not as straightforward as someone saying, "I think I'm superior to people who don't share my skin color." Racism is almost never that blatant, and yet oodles of Americans refuse to call anything less than that kind of bold statement "racism." We have a long history showing exactly how white supremacy—the origin of racism in the U.S.—exerts itself in both strong and subtle ways, and thousands of hours and pages of education from experts describing how racism works on an individual and societal level. But people still insist on the simplistic narrative of "Racism=hating people of a different race."

I've seen many people, including Brit Hume, argue that the word racism has lost all meaning. Frankly, that's a copout. Racism—as both a conscious or unconscious belief of racial superiority and as a system of racial prejudice blended with power dynamics—has a broader meaning than one person hating another person for the color of their skin. But that doesn't make it meaningless.

I've also seen people complain that "everything is racist these days," but no, it's really not. We simply understand more about racism now, thanks to the field of race studies and to people of color offering their time and energy to explain it, so it's easier to identify in its various forms. In my experience, when someone's understanding of racism reaches a certain stage, they start recognizing it in places where ignorance or unconscious bias may have caused them to miss it in the past. That's not imagining racism where it doesn't exist or "calling everything racist these days"; that's simply seeing reality more clearly.

When you really dive deep into the historical, psychological, and sociological reality of racism in America, it becomes painfully obvious that racism is far more prevalent and enmeshed in our society than most people think. Until defensive, mostly-white folks stop automatically denying racism every time the word is used and stop throwing around dictionaries to avoid having to do that deep dive work, we're not going to make real headway on this issue.

Let's stop pretending that the definition and supposed overuse of the word "racism" is the problem, when the problem is racism, period.

Democracy
Photo by Hunters Race on Unsplash

If you're a woman and you want to be a CEO, you should probably think about changing your name to "Jeffrey" or "Michael." Or possibly even "Michael Jeffreys" or "Jeffrey Michaels."

According to Fortune, last year, more men named Jeffrey and Michael became CEOs of America's top companies than women. A whopping total of one woman became a CEO, while two men named Jeffrey took the title, and two men named Michael moved into the C-suite as well.

The "New CEO Report" for 2018, which looks at new CEOS for the 250 largest S&P 500 companies, found that 23 people were appointed to the position of CEO. Only one of those 23 people was a woman. Michelle Gass, the new CEO of Kohl's, was the lone female on the list.

Keep Reading Show less
popular

California has a housing crisis. Rent is so astronomical, one San Francisco company is offering bunk bedsfor $1,200 a month; Google even pledged$1 billion to help tackle the issue in the Bay Area. But the person who might fix it for good? Kanye West.

The music mogul first announced his plan to build low-income housing on Twitter late last year.

"We're starting a Yeezy architecture arm called Yeezy home. We're looking for architects and industrial designers who want to make the world better," West tweeted.

Keep Reading Show less
Cities

At Trump's 'Social Media Summit' on Thursday, he bizarrely claimed Arnold Schwarzenegger had 'died' and he had witnessed said death. Wait, what?!


He didn't mean it literally - thank God. You can't be too sure! After all, he seemed to think that Frederick Douglass was still alive in February. More recently, he described a world in which the 1770s included airports. His laissez-faire approach to chronology is confusing, to say the least.

Keep Reading Show less
Democracy