When I Was Called “Vegetable” and “Cripple” In The Hallway

 I will never be fast enough. I will never be “able-bodied” enough. I’ve accepted that. It’s time the rest of the world did, too.

I was walking in the hallway at my high school in a long line of people waiting to get in the door. I was trying to go as fast as I could, but that is not a very impressive speed. 

Two boys were behind me, and they were messing around while we were walking to the door. I didn’t want to be late to class, so I tried to increase my pace.

It wasn’t enough.

“Cripple,” I heard the boy behind me say.

“She’s like a vegetable,” the other boy laughed.

A vegetable is a person who is so severely impaired mentally or physically as to be largely incapable of conscious responses or activity. I do not have any intellectual disabilities. I am ranked third in my class of almost five hundred students. I am enrolled in honors and college classes. I do have cerebral palsy, but it does not define me, or make me a “cripple” or “vegetable”. I had tried to walk as fast as I possibly could. I’m just unable to pretend that I have no physical limitations.

And then I heard my friend’s voice. She inserted herself between me and the boys and told them off for what they had said. 

“That was him!” one of the boys blamed the other one. It didn’t matter to me who had said what; it was incredibly cruel either way. 

“You just keep walking, Ainsley,” my friend assured me. “I don’t see anyone ‘crippled’, do you?”

I shook my head, unsure what to say. My head was spinning, thinking of comebacks I would never utter, reasons why anyone would ever say these things to me.

The rest of the walk was a blur. My friend was beside me, which I was grateful for. “Thank you,” I told her. “Thank you so much.”

“No problem,” she said. “That was so incredibly rude.”

This experience taught me that for every hateful person in the world, there are so many kind people who do the right thing. My friends and family, and the people who love me, know my worth. They know that I am so much more than the way I walk. 

The rest of the world doesn’t matter.

As I walked to my next class, I was reeling. But in the end, I won’t remember who called me a “cripple” or “vegetable”.  I’ll remember how my friend was kind, instead of the people who were not. I’ll remember my friend, who stepped in and reminded me of what matters when I needed it most. 

It’s Okay To Grieve Having Chronic Pain

 Life moves at a very fast pace. As someone with cerebral palsy and chronic pain, I know that all too well. I try my best to keep up with others because I am determined, but often that means pushing things down—the pain and emotions.

Mostly, my chronic pain is in my hips (near the bursa sac for the more medically-minded people). I have had it for almost seven years now, which feels like a very long time. Because my pain doesn’t really change, I tend to believe that it is pointless to complain. I’ll always have the same thing to say: “I’m hurting.” I try to keep going and ignore how I really feel about what is happening to my body.

You never really get used to chronic pain, regardless of how long you’ve had it. Because it is my new normal, I try to adapt to it. Spoiler alert: In my mind, “adapting” to the pain means trying to pretend it isn’t there. Does that ever work? No.

The pain in my hips is aching at best, debilitating at worst. However, as long as my organs were intact and my joints weren’t wearing down, I told myself I could handle it. My legs have always been the part of my body that I’ve gotten used to not being the way I wish they were. Hip pain is just a very painful reminder of that.

Two weeks ago, though, the fingers on my right hand turned bright red and began to swell. Soon it hurt to bend my fingers. Typing quickly was a struggle. Opening things got harder. Buttoning my uniform shirt made me wince in pain.

I do so much with my hands, and the soon undeniable fact that I was losing functionality made me mad and desperate. I don’t have an answer to why I have chronic hip pain. I couldn’t stand it if I never got an answer for the pain in my hands.

Then I went to my hydrotherapy appointment. Hydrotherapy is a form of swimming therapy that works well because you don’t have to bear as much weight in the water. Everything is looser. I move so much more easily in the water, and as a result I can usually ignore my pain for the time being.

Not that day. I was at a breaking point. My fingers were swollen and aching, I’d had to type and write a lot, and the hip pain that stayed with me was relentless. 

“I’m so tired of being in pain all the time,” I admitted in a rare moment of exasperation and utter exhaustion. “It’s really, really hard.” 

I shut my mouth, feeling horrible that I was complaining to the person who was trying to help me feel better.

“I’m sorry,” I apologized. “Now I’m complaining to you.”

My PT swam alongside me and said the words I’d needed to hear for years: “Don’t apologize for complaining to me. I need to know if you’re in pain. You can’t bottle that kind of emotion up; it needs to go somewhere. Talk to me, talk to anyone. I don’t understand your pain completely, but I know it’s hard.”

Such relief coursed through me in that moment. I was so tired of saying “I’m fine” when I wasn’t, forcing a smile when I wanted to scream that I wasn’t supposed to feel so old and my legs were betraying me.

I grieve that I have chronic pain. I skipped right over the denial stage; pain like this is hard to deny. I waver between anger, sadness, and acceptance.

Chronic pain is called “chronic” for a reason—it doesn’t go away. So really, I have no other choice but to accept my pain. 

Still, I miss the person I was before my leg pain took over, although I don’t remember who she was. Someone who was a lot less irritated, probably. The person I was before could do more, just because I didn’t have so much pain inside me. I miss that girl. I want her back.

I miss walking around and feeling spasticity, but no aches. I miss being able to tell my family that I wasn’t hurting and meaning it. I miss being carefree about a diagnosis. Now I care because I want answers.

I’m angry because I don’t want to be in pain for the rest of my life. I’m sad because of what I’ve missed out on. I am, at least, relieved that I don’t have to bottle this up anymore. It’s okay to grieve having chronic pain. I’ve heard the old adage “You either laugh or you cry”. It is healthy to laugh at times, but it’s okay to cry sometimes, too.

What I Wish I Could Change About Living With A Disability In Society

 TO THE UNITED STATES SPONSOR FOR DISABILITY RIGHTS
Dear Sara Minkara,
My name is Ainsley Hale, and I am from Louisiana with spastic diplegia cerebral palsy. My hope in life is to one day be an advocate for people with disabilities. Throughout my life, I have been exposed to the injustices and discrimination that people who have disabilities—like myself—have to face daily. While I am pleased that there is now an ambassador for disability rights, equality for people with disabilities has a long way to go.
Firstly, accessibility must be improved. I am aware of the lack of accessibility in the White House press room. I am thankful that a reporter raised the question of where the seating was for disabled journalists, but unfortunately the question was ignored. The lack of accessible seating in the White House should be fixed. Furthermore, there is a lack of accessibility almost everywhere, not just the White House. For example, many buildings have stairs without ramps or elevators. I am ambulatory, but there have been numerous times where climbing stairs has been a struggle. Considering that cerebral palsy is the most common permanent disability, I know that I am not alone in this struggle. People who have disabilities should not be forced to climb the stairs in order to get where they want to go. Installation of working elevators or ramps should be mandatory in all buildings with stairs.
Another issue that many people with disabilities face is a lack of accessible parking. Most places that I go only has a maximum of three to four accessible parking spots in the parking lot. There have been many times where I have not been able to use an accessible parking spot because all of them are full. In addition, towing of vehicles that do not have a handicap placard should be more strictly enforced. It is absolutely not fair for people who are capable of walking longer distances to take up an accessible parking space just because it is more convenient. Being disabled means having to adapt in a world that is not equipped for you. Almost nothing is convenient for someone who has a disability. My parents and I have had to struggle to get accommodations. A parking spot should not have to be a daily struggle. My sister has recently learned to drive, and she can park the car anywhere because she is not disabled. Parking will not be that way for me. I will try to save myself from extra pain, which means parking in an accessible space. It would be so much easier if people who did not need accessible parking were not allowed to use it.
In addition, importance of disability rights must be emphasized. When the interaction between the press secretary and the disabled journalist occured, it brought up more than the topic of accessibility. It was upsetting to me that seating, such a necessity (especially for people with disabilities) was overlooked. Nearly 15% of Americans have a physical impairment. When the reporter posed his question, he was not simply asking for himself, but for all people with disabilities. Despite the ADA, discrimination toward people with disabilities is a common occurrence. 
A common obstacle I have experienced is using the elevator. Using the elevator should be simple. However, due to how mild my cerebral palsy is, I do not appear like I have a disability. I have been embarassed several times because of people’s reluctance to allow me to use the elevator. I agree that people who have disabilities should be prioritized when it comes to using elevators. Despite what people think, I do have cerebral palsy, and climbing the stairs is extremely strenuous because of my spasticity. Though I know you can’t change what people think, I wish there was a way to prove that using the elevator is necessary for me. It is often degrading when people question me about my right to use the elevator. It should be easier.

Throughout my life, I have faced discrimination. In elementary school, physical education was a mandatory class. Because of my cerebral palsy, I had to wear AFOs, leg orthotics (braces). In PE, everyone was required to run around a mile-long track. My grade was docked because I could not run a mile. This experience has stuck with me because of its unfairness. My CP is so mild that often I am expected to do things that no one with a physical disability should have to. I suppose what I am asking for is equity. According to “Global Disability Rights”, only 5% of people who have disabilities use a wheelchair. However, the common protrayal of disabilities in society is a person in a wheelchair.  I believe that a disability awareness campaign would be beneficial to show society that disabilities can come in many different forms, not just use of a wheelchair.

People who have disabilities are the largest minority group in the United States. So why are our rights not prioritized? Why does a reporter’s question—in the White House, of all places—not spark change? I do not want other teens like me growing up to realize that we have fewer options than our peers, simply because of differences that we have. Why is this fair? It is the twenty-first century, and it is time that people with disabilities get the injustices we face recognized. Please help me effect change for people with disabilities—it may give other people perspective as well. 

What I Would Like My High School To Know About Being In A Wheelchair

 To my high school:

I haven’t been in a wheelchair very long. I need it because I had a major surgery called a femoral derotational osteotomy. (Yes, I am the girl who probably left scuff marks in the classroom doorways and probably ran over your legs or feet once or twice. Sorry.) A wheelchair is useful for my safety, but I would not choose to use one otherwise. It might look easy to not walk around school and sit in a wheelchair instead, but it’s not easy. I am in pain every day, even when I do sit in the wheelchair. I am much shorter sitting in it and I feel like less of a person. That being said, there are a few things that would help me greatly. Here are a few do’s and don’t’s for interacting with me (and other people) in a wheelchair.

DON’T’S:

• Please do not stand directly in front of me (for example, at an assembly). In the wheelchair, I am much shorter than I am while standing. I can’t see if someone stands directly in front of me. It makes me feel like I don’t matter.
• Do not shut the door on me when you see me coming. Honestly, I feel like it should be common courtesy to hold the door if you see anyone approaching the door, but I can’t reach the door to hold it for myself in the wheelchair. Many people have shut the door on me, and I have just had to wait for someone else to come along, which is really embarrassing. It only takes a few seconds to hold the door for someone, and I promise that those extra seconds make a big difference to me. 
• Don’t cut right in front of me when I’m trying to go somewhere. I understand that I move slowly, but no matter if I do or not, it’s still really rude to cut in front of me. I will move to the side of the hallway if I see that you’re in a hurry; I do feel bad for holding people up. But if you cut in front of me, you run the risk of getting run over. I don’t mean to, but it’s harder to stop the wheelchair while it’s rolling than you’d think. (See my note about getting run over by the wheelchair below.)
• Please do not block the doorway or hallway. I get it. I love talking to my friends between classes when I can, too. But I don’t have the luxury of time. Whether I’m walking behind the wheelchair and pushing it or propelling it with my arms, it takes a long time for me to get to class. It takes even longer when I have to wait for people to notice me and move out of the way. Please be mindful if you are blocking the doorway or hallway. We all have places we need to be. If you have the time to just stand there talking to your friends, I can’t accommodate you. I don’t want to be rude by yelling “excuse me” if you don’t hear me the first time or trying to roll past you, but I’d really rather not be late to class because other people are in the way.
• Don’t make a big deal if you trip on the wheelchair or if I accidentally run over you. I promise, I do not mean to run over people. But when people move directly in my way or cut in front of me, sometimes it happens. I’m always looking where I’m going, and I need the same consideration in return. If you do trip over my wheelchair, I know it hurts. But please don’t give me a dirty look because it’s not my fault you tripped. My wheelchair is not there to inconvenience anyone; however, sometimes it does. I have to get by in a world that is sometimes not equipped for me, and if you trip over my wheelchair because you’re not paying attention to where you’re going, there’s really nothing I can do about it.
• Please, please DO NOT push me without asking. I can propel myself, and it is really degrading when people come up behind me and start pushing. Just because I’m in a wheelchair does not mean that I can’t make my own decisions or do things for myself. When people push me without asking, it takes away the ability I do have. I can still do things on my own even though I’m in a wheelchair. If you push me without asking, I’m sure people usually mean well, but it means I don’t have a choice. I don’t have any control over the situation if people push me without asking, and I already don’t have enough control.

DO’S:

• If you see me struggling (or if you think I’m having trouble), please do offer to help. There have been several times that I have struggled to open a door and people have stood behind me and just watched. There is a big difference between offering to help and swooping in and doing something for me. I would really appreciate an offer to help if I do look like I need it.
• Please do watch where you’re going. It can pose a danger to us both if you don’t. I know it hurts when you collide with the wheelchair, and it also hurts me. When people ram into my wheelchair, it jolts my legs (including the one I just had surgery on, which really hurts). I will watch where I am going; all I ask is that you please watch where you’re going, too.

I know that I am not entitled to these things above, but it would be very helpful and make my day more tolerable. It is really hard for me to accept being in a wheelchair because I need a lot more help. Many people are very inconsiderate when they interact with me, but the only thing about me that has changed since last year is my mobility. I would so appreciate a little more consideration. The world isn’t always built for people who have differences, which is frustrating, but the way I see it, we can all learn from each other. We just have to have empathy. The fact is, both people with and without disabilities exist in this world, and it is my goal to make the world safe for both. 

Forgiveness & Living As God Says

 “Bless those who persecute you; bless and do not curse them.19Beloved, never avenge yourselves, but leave room for the wrath of God;* for it is written, ‘Vengeance is mine, I will repay, says the Lord.’ 20No, ‘if your enemies are hungry, feed them; if they are thirsty, give them something to drink; for by doing this you will heap burning coals on their heads.’” —Romans, 12:14-20

What is forgiveness, truly? I have been told that forgiveness is solely for us, not for the people who have wronged us. I have written about forgiveness before, but it has felt slightly hypocritical to do so because I still feel anger about some of the things that have happened to me. 

I have heard the quote, “Hate the sin, not the sinner,” and that quote resonates with me very well. It is not always healthy to hold onto anger, but it is okay to be angry. Anger is a productive emotion, for good or for bad. However, it is my aim to live like Christ would want. Anger and hatred do not only hurt those who have hurt us, but they hurt ourselves. Anger and hatred—bitterness—can change a person. If you are bitter, it is harder to love others.

I have been tempted to retaliate many times in my life, but have talked myself out of it by reasoning that refraining will make me a better person. It’s the same principle that causes parents everywhere to say: “Be the bigger person.” In the Bible, God says, “Vengance is mine; I will repay.” God has control, and He chose to give humanity the gift of free will. As humans, it is not our job to judge others; our job is to love. The rest will come; we just have to have faith.

To live like Christ, we must to be kind to all, even the people who have hurt us. If you help your enemy, you are being noble and truly “the bigger person”. The humility that one displays when being kind to someone who has hurt them is “the coal burning on his head”. Humility is an attribute that everyone must respect. 

The biggest lesson about forgiveness I have encountered comes from Jesus’ crucifixion. It was humans that accused Jesus of being a fraud, humans that betrayed Him, and humans who nailed Him to the cross. And yet, in return, Jesus gave humanity the ultimate gift: eternal peace and a place in God’s kingdom. After all that Jesus endured, He did so much for humanity—put his “enemies” above Himself.

We are merely humans. We’re not perfect. But if we can forgive, that’s a step closer to God. Forgiveness is one of the hardest things to do. It is as much for our enemies as it is for us. 

Objectification of People With Disabilities Is Not Okay

 Whoever is trying to pull you down is already below you. —Ziad Abdelnour

Recently, I have been using a wheelchair to get around school after my femoral osteotomy surgery. It’s been hard in a very different way than when I was walking. I have lost a lot of independence. Though I can propel myself using the wheels, it’s not the same.

I have felt insecure lately, mostly because of being in a wheelchair. There have been times where I stood up and I heard whispers behind me because of the scars on my legs—but using the wheelchair has made me feel inadequate. 

For one thing, I am much shorter than everyone else sitting in my wheelchair. People have to look down to talk to me, which makes me feel less-than. Many people don’t see me coming. But sometimes being invisible to other people isn’t the worst thing.

This week I got a comment I never expected. I was wheeling in the crowded hallway when I heard a boy behind me. “I want to push that wheelchair girl,” he said to his friend. His tone implied he meant something much less innocent than the words that came out of his mouth. I turned around just in time to see the look on his face—and I wish I hadn’t. The look was disgusting. 

He wasn’t seeing me at all—he was seeing someone shorter than him, someone who couldn’t do something that he could. And so he chose to objectify the wheelchair—objectify me.

I am not my wheelchair. I am not “the wheelchair girl”. And I certainly don’t need the implications of a boy I don’t even know. That is such a limited mindset, to just see a girl in a wheelchair.

I know that comments like that happen every day. And it shouldn’t be allowed to happen. My first thought after the boy said that was to turn around and roll right over his feet. All-consuming anger filled me, and I felt the urge to do something. I felt so low, just letting him say that to me without doing anything. I felt like I was powerless, just a girl in a wheelchair, which was what he wanted me to think. But I didn’t roll over him. I kept rolling down the hall. He wasn’t worth it. I was better than that.

I am no better or worse of a person than anyone else because I have CP. People shouldn’t consider me less of a person because of my disability. If they do, well….. There’s no way to change people. Other people are not in my control. Lately, especially, there is a lot I don’t have control over, like my wheelchair, but I will always be in control of my actions. 

Objectification of anyone is never okay, but people with disabilities especially have enough to deal with. If humanity is dark enough to objectify disabilities, then I honestly don’t know what to say. I am very frustrated by this encounter. 

No one is above me just because he or she can walk better than I can. That’s not how it works. A person should be defined by the content of their character. Everyone should get the chance to show that they are more than their circumstances. We all deserve that chance. 

I—and all people with disabilities—deserve to be able to take up space without being objectified for it.

Being In A Wheelchair Should Not Mean I’m Invisible

 

Recently, I have had to use a wheelchair after my femoral osteotomy surgery because I can’t walk very well in public. That has opened my eyes even more to the absolute lack of awareness and accessibility for people with disabilities. I was very reluctant to use a wheelchair because I was sure that using a wheelchair would lead to emotional struggles. I expected that people would be mean or ask a lot of questions. The exact opposite happened. It’s like being in a wheelchair made me invisible to everyone.

On the first day of school, a girl that my sister and I are both acquainted with said hi to my sister and then walked right past me. In my first class, I had to sit in my wheelchair against the wall for ten minutes because all the desks in the front row were full. Two of my teachers have assigned mobile activities and have forgotten that I can’t walk. No one holds the door for me. A paraprofessional was assigned to push my wheelchair and help me get to class, and people just watch us struggle with the door. It is very disappointing. No one watches their surroundings. I have been practically run over several times and my left leg has been jostled, but none of the kids seem to care.

And in my theater class, where I found so much acceptance last year, I sat near the left side because I came through the left entrance. When my classmates came in, invariably most of them would offer me a brief greeting and then go sit on the right side. I sat by myself—not by choice. Everyone in my theater class walked past me. 

I didn’t change as a person. The only thing that changed was my mobility. My cerebral palsy is not contagious. I am the same person I was last year, but with different experiences. I don’t understand why a wheelchair is so hard for other people to understand and deal with, when I am the one who has to tolerate the pain and the overall daily trials. 

I understand that my being in a wheelchair is temporary, but that does not mean that the lack of accessibility and awareness is okay. Not only for me, but for all the other kids who need accommodations. Besides, my mobility may decrease as I get older, like many people with CP, and then I may need to rely on a wheelchair. 

People using wheelchairs shouldn’t have to be ignored or not prioritized. Disabilities are a natural part of life, so they shouldn’t be scary. People with disabilities are people first. My CP is not going to go away if people just don’t acknowledge me. Everyone should overlook their prejudices about wheelchairs and try harder to be accommodating. A disability is not the person’s fault, so we should not be treated as lower-class.