I Am “Disabled,” And That Label Matters

The first time someone asked me about my handicap placard, I didn’t know how to respond. I was entering the local YMCA when an elderly man stopped me as I was getting out of my car.
“Why are you parking there?” He asked,” Some people actually need that.”
I stared at the man for a long time. For the past three years, I had been battling three autoimmune disorders that left me severely disabled for almost all of high school. At that moment, I was recovering from the ordeal ― finally properly diagnosed and able-bodied for the first time since I was fifteen. My face was swollen from Prednisone, but besides that, I probably looked fine to this stranger. Suddenly, I realized that this person didn’t know I was sick because I didn’t look sick anymore. The realization hit me like a brick.
Finally I mumbled something along the lines of “I’m disabled” before running inside trying to hide my tears. I could tell he didn’t really believe me, and looking back I don’t really blame him. That’s not the point of this story, though. What I said to him is actually what’s important. That was the first time I had ever knowingly spoken the word out loud.
Disabled.
I started toying around with what to call myself as soon as I realized that the diseases I have are chronic. Before being diagnosed, I thought about my illness like it was a cold ― “someday it will go away” ― because they didn’t really know what was wrong with me. This was made worse by people at church and school who told me to “get better”— as if the problem was going to someday disappear like the flu or even cancer. No one in my life seemed to understand that nothing was going to “fix me.”
That alone bothered me more than anything else.
When I started messing around with words, though, nothing fit at first. “Crippled” didn’t sound right for me. “Chronically ill” was kind of long-winded. Eventually, I settled on “disabled” — sure, I could go with that. I never actually said it out loud, though. At least, until that man asked me in the parking lot.
After that, I started saying it a bit more. Most people in my life knew what had happened to me; until I came to college in the fall. Then, I realized that I would have to explain it to the people around me and that the words I used mattered. It didn’t take me long to learn that the words I use to identify myself would shape how I’m treated and how I see myself.
The language behind disability is incredibly important and often forgotten by the able-bodied world. It’s a part of political correctness that people don’t think about until it effects them.
I am disabled; I have a disability. What am I?
I’m not the only person who has this question. In the Autistic community this is also a serious debate. Some people refer to themselves as being on the autistic spectrum, rather than simply being autistic. The difference in between saying that you are something and you have something is important when it comes to perspective. Saying that you have something implies that it is a part of you— just a bit of the bigger picture. Having something means that you own it, just like you have a car. When you say I am something, then you’re saying that you are it. I am this. Not only does that make it your number one identifier, but it also says that ‘this’ is what you are.
An easy, real life example of this is college majors and minors. People say “I am a political science major” rather than “I have” one, for a reason. Those two words tell a lot about a person’s view of themselves. This is equally as important in political correctness. Words matter because they represent how we claim experiences and perspectives. In a world that wants to say that disability is a negative, claiming this quality can be a radical notion.
Disability has always been a tricky topic in that regard. I’ve found that people often romanticize the idea that everyone is equal, forgetting that this kind of thinking has real-world implications. Believing that people are inherently all able to do the same things isn’t necessarily accurate when it comes to people with any kind of condition. The idea behind the philosophy has good intentions, but it ends up harming a person’s ability to leverage accommodation for themselves because it hinders the idea that not everyone can live in the same world.
A friend of mine with Cerebral Palsy recently had an experience with her trainer after he repeatedly told her to take “can’t” out of her vocabulary when she told him that she couldn’t do an exercise. This is incredibly ignorant, becuase it assumes that she’s “being lazy” instead of recognizing that her body literally can’t do something.
All “men” are not physically created equal. That’s okay. The concept behind disability is often misinterpreted to mean that ‘disabled’ people should be brought into the world rather than saying that the world should be made to accommodate them. The Americans with Disabilities Act and accommodation services don’t exist to make people the same, but instead attempt to adapt the world to someone so they can be successful on their own terms.
Today, nearly eight months after than man confronted me, when people ask me about my handicap placard I call myself differently abled instead. I am differently abled because I have a disability. That doesn’t have to be a disadvantage, but I do need to live in a world that’s a little bit different to be successful. That’s okay.
Also Find it Here: On the Huffington Post
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If You Repeal Obamacare, You Are Going To Kill Me

”Have you thought about your health insurance yet?”
I was sitting in my rheumatologist office, the week after the election of Donald Trump, dangling my feet over the edge of the doctor’s table. I was in for my biweekly appointment and blood work, which has been a regular part of my life since my diagnosis of three autoimmune conditions in May. Appointments are a ritual of pokes and questions that I’m used to. This time was different, though. My health care provider was worried. So was I.
Around the time I turned 18, I found myself in and out of hospitals on a regular basis, fighting for my life instead of going to high school. My medical bills, just for the month of December 2015, were $81,500. Had I been kicked off of my family’s insurance at 18, not only would my family have been forced into bankruptcy, but I probably would have died. And even if I hadn’t, the college education that I’m getting right now might not have happened.
But I’m okay. Because the Affordable Care Act made my month-long ICU stay $0.
Unfortunately, though, as long as I live, the medical bills will never stop. The medication that I take every 28 days to keep me on my feet is $65,000 a dose―which is more than some people make in a year.
The Affordable Care Act makes it $50.
The ACA also ensures that I can never be rejected for having a preexisting condition, something that people in the disability community dreaded beforehand.
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The truth is, for an able-bodied person, it’s easy to make healthcare just another political issue to argue about with friends. The ACA has been so heavily politicized that its repeal was one of the hallmarks of the Trump campaign, which makes sense. The ACA is far from a perfect law in its current form. There are a large portion of Americans, who are able bodied, who are now forced to pay huge premiums that they cannot afford. That’s understandably upsetting, but there are ways to amend the law to fix that. But a full repeal is more than a death sentence to Obama’s legacy. It is literally a death sentence to millions of Americans with problems like mine.
I am a 19-year-old, female college student living on my parents insurance. You don’t know me. You never will. But I could also be your daughter. Your best friend. I know that there are inherent issues with the law that was supposed to be our saving grace, but for someone like myself, whose life depends on blood work and doctors’ visits, it is the thing that has kept me and many others alive.
These are the reasons that the disability community fears the Trump administration. For us, health care isn’t a political issue. It’s the difference in between getting up in the morning to go to work, and being on our deathbeds. Walking and running. Going to class and failing. It’s a mother being around for another Christmas. Parents paying for a dying child.
So, for a party so concerned with the life of the unborn, does mine carry equal value in your eyes?
Also Find this article here:  On the Huffington Post

Out of Many, One

When I think about women, the first person that I think about is my mother. As a young woman, in old video tapes. Complaining about making dinner. Me; laying on her stomach, watching TV comfortably on her bed.

Then my grandmother; painting oil on canvas. My sister; reading her favorite book. I think about my three cousins; playing cards and screaming at my brother “play faster!”

I think about the girls on my dorm room floor. Loud. Obnoxious. Colorful. So much of everything; all at once. I think about the woman that cleans the halls in my dormitory. The woman that makes my coffee at Starbucks. The woman that sits on the sidewalk brooding over a cigarette like a dragon with the eyes of a child. I think about the women who scream at me as I pass on the street about ‘saving the children’ and the ones that paint themselves with their own choice. Sometimes I think about the girls you never think about. You never want too. Becuase it’s too horrible.

If you ask any woman on the street what ‘womanhood’ actually means, you will never quite find the same answer — and yet you will at the same time. You’ll get the nervous laugh. Period jokes. Sex. Marriage. Kids; the decision to not have them. Every culture, religion, and race have something different that proclaims “this is what a woman is” for the whole wide world to see.

And yet, Womanhood isn’t definitive. It’s flexible but tougher than leather. It is so much and nothing at all. That’s the beauty of it all. Out of a sea of faces, somehow, we all look the same. We all want the same things. Happiness. Freedom. Sucess (whatever that means for you). It’s the way that we choose to get there, from our pasts to the present, and the events of our lives that make us different.

That’s really what it’s all about.

The Women’s March on Washington is about difference. It’s about accepting all women of size, shape, and color — but also recognizing that it is about being the same. There is so much to womanhood. The definition truly lies in being absolutely everything; all at once.

Out of Many, One.

Say Her Name: It’s Time to Respect Ethnic Names

Photograph by Kathryn Poe

“Have you heard from them?”

I clanked my fork on the table and it fell off the corner of my plate. I was struggling to hide my irritation. I knew what was coming.

“Dr. Iel-Eeliki should have called by now,”

I looked at my father and corrected my doctors name — a Pakistani immigrant. My father giggled like a child, said it incorrectly again, and continued eating.

That’s when I left the dinner table.

Over the course of the last two years, this doctor — this man — had spent hours studying literature just to keep me alive. Yet, my father couldn’t even take a couple of seconds to learn how to say his name.

This isn’t an uncommon occurrence. Growing up, I constantly listened while my white classmates mocked and butchered black, hispanic, and other ethnic names.

“Who would go through the pain of childbirth for 9 months just to name the baby Laquisha?”

“Why would you name your child Mohammad? This is America.”

“Your name is Pablo what?”

“How am I supposed to pronounce that?”

There is power in a name. Whether we like it or not, it is one of the most important identifiers in our lives. Entire brands are built on million dollar names like Kardashian and Trump. Barack Obama has been accused of links to terrorism just for having the middle name Hussein. When the newest Disney princess, Moana, proclaims in the movie“I am Moana” she is not simply claiming herself. She is claiming the weight and importance of her culture.

I am Kathryn Poe.

I am.

Think about that.

I understand that names are difficult — I myself am terrible at pronunciation — but they are important. Names are representative of culture and family history. When an ethnic name is ‘dumbed down’ for an American speaker, something beautiful is lost. American culture should absorb, not reject, diversity in every form. How can we argue that we, as a society, provide fair representation if we can’t even try to get a name right?

“It’s just too hard.”

Racism is a subtle beast.

If Tomi Lahren can call out Seal on Twitter for mispronouncing her name and get the full support of conservative America, then I expect them to defend Laquisha too.

Violence Against White America Exists. Oppression against White America Does Not. Here’s Why:

“THIS IS A HATE CRIME!”

I read, scrolling through Twitter when I should have been in bed. I had been watching videos of baby otters for about 15 minutes, and I was starting to transition into puppies when the headline first caught my attention.

#BLMKiddnappings

I was automatically interested, and it didn’t take me very long to find more information about it online as details developed. I watched videos and read the information in horror, and followed the story as it developed into the next day. Automatically, I agreed that what was done, was in fact, a hate crime. It was horrific and an act of violence that should certainly be labeled as such. But as I read the comments, and followed the hashtag as it developed on Twitter, I also noticed another common trend.

The incident was quickly labeled by some online as more proof of what some refer to as ‘reverse racism’ and that the oppression of white America. The ‘violence’ of movements like #BlackLivesMatter. This, of course, isn’t the first publicized incident of violence against white Americans. After the election, a video surfaced of a man being forced out of his car and beaten for apparently supporting Donald Trump. In the days following the incident, it was constantly brought up to me in conversation whenever I spoke with dismay about the apparent rise in violence against minorities after the election.

“They’re attacking us too. There’s violence on both sides.”

This is true. No one is arguing that there have not been punches thrown on both sides of the isle. However, there’s a couple of important points to consider before jumping onto the ‘reverse racism’ bandwagon and claiming that this justifies the existence of white oppression.

Simply: violent action is not inherently oppressive. Sometime’s violence is violence. Sometimes it’s violence against the perceived oppressor. Oppression is the action of constant harm to a minority, or the ability to put restrictions in place that limit the actions or ability of a people. The truth is that no white man in America can ever say that he was kicked out of a job, home, or religious institution for being white. Yes — in today’s world, it’s easy to feel like White people are constantly being demonized. Yes — ugly stereotypes exist about Trump voters. But the objective of a racial discrimination is discrimination against of those who do not hold power and maintaining the power of those that do. Simple. Violence against those who are perceived to hold power can not be racism for that simple fact. It is also not an oppressive action if the people being acted against are apart of what is traditionally the elite or more fortunate.

In the end, what happened to that young man was wrong and disturbing. He was an innocent victim of a hate crime targeted at a white person. But white America is far from oppressed — and that’s not going to change anytime soon.

2017 & The Year of Disruption

“This has single handedly been the worst year of my life,” my mother said. She was sitting on the floor, with piles of boxes covered in wrapping paper with cute, neon colored Santa Claus in a trippy circular pattern. She pulled at the scotch tape and it made a sticky, plastic snap. I was sitting on the bed, looking down at her— but not really. I was a little bit too focused on my phone. When I finally looked up at her she beamed, “but I did just wrap your Christmas present in front of you.” I rolled my eyes.

I thought about her words— the part where she proclaimed that 2016 was just simply the worst. She wasn’t wrong. In some ways, though, I didn’t necessarily think that it was “the absolute worst.” Instead, it was the year of change on a larger scale than most people experience in a decade. This was the year of Trump. Brexit. The Syrian refugee crisis. The year that racism became a real topic in America, and not just a history lesson. This was the year of the woman, yet it wasn’t at the same time. The year of bathrooms. The year of Pulse. The year that nonviolent resistance became something real in my life instead of a sermon on Sunday morning.

But for most Americans looking into the future, with more uncertainty than I’ve ever seen in my lifetime, we are caught up in the confliction of Optimism. The truth is, people have told me my entire life that the world will be okay, and yet the only time anything ever gets done is when someone defiantly says, “No.”

“Everything’s not okay.”

Optimism for the sake of being optimistic is more damaging than a healthy cup of cynicism. More damaging in its own right. In uncertain situations, optimism gets in the way of progress. Sometimes things don’t work, but people are too scared to be labeled a “giver-upper” to reevaluate themselves. Buy colorful duct tape, put the system back to together, and it’s all fine.

“Everything is fine.”

And yet- how much better would the world be if it was okay not to be okay?

No one in America has ever earned their rights by being completely optimistic. Yes- they were optimistic in the potential for change—but there is a stark difference between sitting idly on the side of the road, baptizing yourself every morning in false reassurance and recognizing that the world won’t change unless you do. Take Martin Luther King Jr, the only black man in America that all white people seem to love, and look at what he actually preached. Oh yes— the man had a dream. But the only reason that dream was successful was because people were willing to be disruptive. Cynical in the system’s ability to serve them. Optimistic in their own ability to change it. Even today, when a black man kneels on a football field in a statement, the world declares his single act of disruption as too much.

“Why can’t you just be optimistic about things? This will change in time.”

But don’t try to change it yourself.

The women’s rights movement still experiences this. Feminism is a dirty word and a complicated one. The concept of Womanhood is a complexity far beyond the sights of most. Womanhood is inherent on culture. Race. Sexual Orientation. It is often complacent on perspective of men. American feminism forgets our sisters of color still struggling in the trenches in the third world. It ignores the young, female immigrant, trying to follow our happily advertised American dream by criticizing her efforts. It blatantly disrespects the urban poor by refusing to provide sexual education because pretty, blonde women in big houses think that sex is dirty because the men in church said so. I am cynical of the movement, and yet—I am still a feminist. A womanist. Because none of this will change unless people within the movement decide that it is not okay.

So this year, when you’re making your New Year’s resolutions, I encourage you to make this the year of disruption. Correct the man sitting next to you on the airplane. Tell that boy in your 9am math lecture that he’s being a sexist. Bring up the glass ceiling in that job interview. Make that clerk in the grocery store pronounce your ethnic name correctly. Make sure the kids know that this is not alright. Remove your faith in other people’s actions, and instead change them yourself.

And maybe, in all of our cynicism of the world, 2017 will be our year.

 

How To Live When I Should Have Died

The EMT shook his head. I caught the doubtful look in his eye, but I didn’t know what it meant. Only months later, when my mother was recalling those moments in conversation, would I learn that the ambulance was refusing to transfer me to another ICU because they were afraid I wouldn’t make it there.
“Why do bad things happen to good people?”
I was laying flat on the emergency room table with a temperature of 105.8 and the top number on my blood pressure cuff blinking 52. It was 2015, the day after black Friday- and I wasn’t surprised to be back in the hospital. My sophomore year of high school I’d been diagnosed with an alphabet soup of issues. When I moved I cried. When I laughed my body burned. I woke up in the morning dreaming about going to sleep. Pain was my life.
That moment was different though. To be honest, I don’t think I knew how close I was to death, but I remember thinking to myself that once upon a time I had wondered what it felt like to be on your deathbed. Now I knew.
Today, we know for a fact that somewhere along the line in that ER room the doctor made a decision that saved my life. Along with antibiotics to treat the infection that wasn’t ravaging my system, she gave me steroids. Given that they thought I had a septic bacterial infection, they really shouldn’t have.
Even to this day, I am haunted by that.
Over the course of the next 4 months, my world slid downhill. I lost 30 pounds. Every crevasse of my body was touched by a doctor’s hand and I had more track marks than a heroin addict. There are entire months I don’t remember, but the moments are vivid. Sitting in the shower and screaming because I couldn’t move. Realizing I couldn’t turn a doorknob for the first time. Hating myself for thinking once that if I didn’t wake up the next morning it wouldn’t be so bad. When I looked in the mirror, I was dead.
Then, in April, everything changed. I had my fourth major relapse, and during the hospital stay I was diagnosed with not one, but three autoimmune disorders. It turns out that the macrophages in my body like to eat my internal organs in their free time and previous diagnoses had been slightly off. A month later, the day before high school graduation, I was given a new drug as a last hope. The next day, I woke up, put my feet on the ground, and got my diploma. The second I touched my it, I felt like I won. But I also felt conflicted. All of a sudden, I was faced with living life.
When you don’t think you’re going to make it to senior prom, how do you accept that you’re going to live instead?
Chronic illness is the epitome of taking a casual, Sunday stroll through the shadow of death forever. There is no magical light switch that allows me to take a break when I’m tired or emotionally drained, and even if there was, some days my hands are so bad that I’m not sure I could switch it off if I wanted too. On top of that, the body that I had for 18 years ceased to exist the second I got put on 60 milligrams of Prednisone. I felt ugly and embarrassed by my body. Suddenly, I wasn’t me. I didn’t know who this was.
The Monday after graduation, at 6:30 am, I put on my running shoes for the first time in three years and hopped on my bike. I watched my feet turn the wheels like it was magic and reminded myself that working out would never hurt like having an IV burst in your arm. I made a choice in that moment. That would be the summer I would somehow find my okay.
Part of me decided that the first thing I needed to do was mourn myself for a little while. In my mind, my childhood ended in that ICU room, but I had never gotten the chance to say goodbye. I needed an action to make it official, so I dyed my hair pink and took all of my old pictures of myself out of my room. I looked down at my hands, turned the knob to my bedroom door all by myself, and made a promise. Losing the war wasn’t an option.
I sat down with myself and thought about what I wanted. There was so much I wanted to do. What did I even like? And what was I going to call this? Claiming my disease and my disability was a big milestone. The first time I told the story out loud I sobbed. I looked at my giant, swollen face in the mirror and told myself that it was okay to be scared.
Somehow, it got better after that.
When I finally went to college in August, I wanted to try everything, and for the first time I could. I dyed my hair the shade I’d always dreamed and got in shape. I found makeup. For the first time, when I looked in the mirror, the person looking back was me. I found her.
I fought for her.
Looking back, I understand now why bad things happen to good people. The truth is, I am who I am today because of the worst moment of my life. Good people are made from bad things. Every single needle stick is another reminder that my body is literally trying to eat me, and yet I know that because of it I’m going to get to watch my brother and sister graduate high school. I’m going to be at my best friends wedding and be home for Christmas this year instead of in the Hospital.
I have may almost died, but I found my life.

I Was A Racist. You Probably Are Too.

“Well, I don’t know,” she said. We were sitting in the middle of the library, studying for midterms. I was a senior in high school in the middle of an all white, Ohio town. I knew what she was going to say, but what she said first seemed to excuse it.

“I’m not trying to be racist, but I just don’t feel safe around black men. It’s nothing against them.” She shrugged,”that’s why I never go into Canton alone. You never know.”

I looked up at her for moment, but decided to excuse the behavior. It was an every day occurrence, and a phrase that in my mind meant “well”. She knew what she was saying, and that didn’t make her a bad person? That didn’t mean she was being racist, she just…was.

To be honest, this wasn’t a phrase I thought a lot about until college when the Campus Democrats hosted a Black Lives Matter focused meeting. It was brought up as a talking point, and I remember slinking back in my chair. I thought about the girl in the library. By nodding along like it was fine, I had validated her behavior. That made me just as bad.

In high school, phrases and jokes along these lines weren’t uncommon. I once got in a spat with a friend after telling another girl, the only black girl in our class, about a racist joke that one of the boys had made. The person who made it was furious with me- but only because he had been caught. “That’s not how I am,” he said,” and I can’t believe you told her.”

“Of course, I told her,” I said,”if she can’t be in the room when it’s being made, then how is it okay at all?”

People from my generation are taught about racism in schools like it’s another concept. The 1960s. MLKJ. It’s all over. Racism isn’t real in the United States today- people are equal. From what I’ve seen, for the most part, people are actually fearful of being racist. It’s the “big R word” that no one feels comfortable with. Accusing someone of being a racist is a huge offense today- and yet most people being accused are. It doesn’t matter how many times “I didn’t mean it” and “I’m not like that” are thrown around. You are.

I am too, occasionally. Like I said before, I grew up with jokes like that in school. A group of boys I used to hang out with repeatedly pointed at every black man and said, “LeBron, is that you?”

This isn’t your grandmothers racism. Today, it has nothing to do with signs that say colored, and everything to do with not recognizing the systemic differences that black Americans, Muslims, hispanics, and other people face. Most of the time, it’s not calling someone a “nigger” or a “faggot” but instead talking about how rap music is crude and disgusting while listening to a white man in a big hat talk about having sex in the back of a truck. Racism is not “black schools” and “white schools” but instead socioeconomic difference that determine quality of education. Racism is doing the Lion king with an entirely white cast, at a white school, and then claiming that it’s not cultural appropriation (even though the integrity of theater like the Lion King and Hamilton emphasizes that it’s done with ethnic minorities). Racism is white men claiming victimization when they are called “Racist” instead of simply acknowledging that they were incorrect, or saying that peaceful kneeling in front of the flag is wrong while supporting white, pro-lifers who hold signs with dead baby parts on the side of the road.

Racism is me, letting that girl tell me that black people are dangerous but ending it with “but I’m not racist.”