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. 

Trusting My Choice—and My Legs—After My Femoral Osteotomy

 

I had to make a choice this summer. My choice was this: be in pain indefinitely or have orthopedic surgery. You can probably guess which one I chose.

I didn’t consider surgery a particularly fair choice, but one thing I have learned in my fifteen years of life is that life can be both beautiful and unpredictable—and unfair. Life isn’t fair. Spending the summer before sophomore year recovering isn’t fair.

I can acknowledge all of that, but then I have to move on. The surgery was logically my only option. It was the opportunity God gave me, and I felt I had to take it. 

I was put to sleep for three hours and when I woke up, my legs were different.

I was unnerved. I had a rod and screws in my leg and my femur—the biggest, longest bone in the body—was broken, albeit intentionally. For more than fourteen years, my femur caused my leg to turn the wrong way. Now it was like I had a new start. 

As I lay in the hospital bed, my mom pointed out that my feet were turned outward for the first time. I think she almost cried. I might have cried, too, but I was too loopy. The outward rotation of my left foot, specifically, meant that my hips had less pressure, which was one of the goals of the surgery. 

Since the surgery, I have had many ups and downs. I had been home from the hospital for two days when I started having chills and constant spasms. My parents helped me to my bed and I eventually fell asleep. Generally, sleeping after the surgery has been hard. I never found it easy to fall asleep to begin with, but after surgery, the pain and spasms kept me awake. I slept during the day because the medicine was very strong and made me drowsy. The pain would move from my hip, settle in my femur, and travel to my shin. Despite the pain, I had some amazing accomplishments after surgery, too.

The day after my femoral osteotomy, I started using a walker. I noticed that as I walked, my left foot would either straighten or turn outward, not inward like it used to. The lengthening of my abductors helped to drastically widen my stance as I walked. I had walked the same way for almost fifteen years—knees bent, left foot inward, narrow stance. Now I wouldn’t trip myself up because of my rotated femur and lengthened abductors. I thought that was amazing!

However, for the first few weeks of my recovery, my left knee refused to bend. I couldn’t tell that my knee wasn’t bending but found out when I began intensive physical therapy. I also couldn’t determine the direction of my feet—whether they were turned in or out, or straight. The natural way my left foot was for so long was turned inward. Gradually, I guess my body was trained that my left foot’s crookedness was actually straight. My inability to determine the direction of my limbs is neurological. My physical therapists hope this will get better as I continue to relearn how to walk.

The loss of independence that the surgery caused has been really difficult for me, even though it’s temporary. I can’t walk for long periods of time. The surgery and sharp femur pain wiped out my stamina and endurance. My sophomore year of high school starts in three weeks, and I’m not sure if I will be able to go to school without an aide or pull my roller bag by myself.

I don’t trust myself anymore. When I walk, I feel like I’m losing control—going too fast, locking my knees, hyperextending. I’m constantly paranoid that the rod slipped out of place and that my left foot is turning in. It’s exhausting, and I often wonder if I will ever trust my legs. I wish that the muscles in my legs would learn to work together soon.

I never really had control of my left leg before. It often felt like my left leg would cave in on me. And even back then, my right leg had to support most of my weight. My struggles with my left leg are not my body’s fault. But my left leg has never really felt like it’s mine. Now, especially, my leg feels like it belongs to someone else.

When all the bandages came off of my incisions, I remember sitting in the bathtub one night, tracing a few of the scars. I was thinking that I’d had chronic pain in my hip, especially the left, for so long, and now I had a visual representation. I looked at all the scars and felt, honestly, that my legs were so flawed. That had to be why I’d needed so much surgery. I looked at my left leg and thought that it was so ugly, inside and out. In reality, my left leg was doing the best it could, using the muscles that had the least amount of spasticity. My left leg has the help it needed now. 

The pain has been severe and intense since I’ve had surgery. My physical therapist has pushed me to achieve what I can, and I’m so grateful for his help. However, there were some times I had some emotions to let out during PT appointments. During one appointment, he laid me on my stomach and pushed on my quadricep. I nearly cried. I struggle with telling my physical therapist that I’m in pain because I feel like I’m complaining. Throughout my recovery experience, I have had to learn to ask for help. 

I have had to use a wheelchair to go to appointments with my doctors and to physical therapy. It is emotionally draining, even though my use of a wheelchair is temporary. I feel like everyone stares at me. I am too short to see much of anything when I sit in the wheelchair. My legs stiffen and it is very painful to sit in the wheelchair for an extended amount of time. Overall, much of my recovery process has been emotional, in good ways and bad.

I have thought so many times during this surgery that one type of pain was swapped for another. My chronic pain was replaced by a new bone-deep, intense pain. I wasn’t sleeping well. I was struggling to walk. At night, I was exhausted. I knew the surgery had benefits. So that’s what I’ve tried to focus on.

A few weeks after my surgery, I was able to stand up from a chair without using my hands—something I couldn’t do even before the surgery. I was shocked and so, so happy. It was emotional for me. My eyes welled up and I smiled at myself in the mirror. I had never done something like this before. As I did it again, I think that’s when I fully realized that the surgery was worth it. The action was so unnatural and new that I kind of wondered if my legs belonged to a stranger. 

On the stairs, my feet don’t turn in anymore. My feet would dramatically turn inward, which was a major fall risk. My physical therapist told me in the past that my feet would never be straight while climbing stairs. He thought it was impossible. My femoral osteotomy helped me achieve something that was impossible for me.

I use more muscles than I did before. There is a muscle near my shin that has been activated lately. A few days ago I told my mom that my shin was hurting, but that it wasn’t a shin splint. Turns out, I had started to use a muscle that I had never used before called the anterior tibia. I was stunned. It took me fifteen years to start to use one of the muscles in my body. Because I always dragged my left foot, the muscle that lifts the foot from the ground during a gait pattern had never been used. I felt like I had just discovered that more was wrong with me than I ever realized, but then I reflected that the surgery has given me a chance to do things I never could before.

So yes, the pain of a femoral osteotomy is miserable at times. Yes, I can’t really trust my legs yet and have to relearn how to walk. But having surgery has shown me so many small miracles. My legs finally have the help they need. I can do so many things that aren’t impossible anymore.

God’s Bigger Picture Plan Through My Surgery

 

“Trust in the Lord with all your heart and lean not on your understanding; in all your ways acknowledge Him and He shall make straight your paths.”—Proverbs 3:5-6

Over the years, I will admit that I have been frustrated with God. All the times when I have struggled with people being mean based on my disability, feeling imperfect, and these last six years of chronic pain, I have prayed.

My family and I tried almost every method to treat my chronic pain. I went to doctor after doctor, who all offered possible solutions. Some solutions worked partially, but I was still in a severe amount of pain. I began to ask God what I had done wrong.

When my grandfather died in the midst of my pain, I wondered why God decided to take away the one person who I felt understood my pain. Gradually through my femoral osteotomy recovery, I realized that I hadn’t necessarily done anything wrong; God’s timing and mine were probably different. 

It turned out that having surgery was probably the best solution anyway. The femoral osteotomy surgery would rotate my femur so that my left foot would either be straight or turned outward slightly. None of the medication or other possibilities for relief would have corrected the way I walked. Now because I had surgery, I have a chance to be in less pain and to fall down less.

There were so many times when I cried to God, wondering why I had to handle so much pain. I didn’t feel like I was old enough to deal with it. I worried that I disappointed God somehow or was unfaithful to Him. I didn’t know what else to do. 

I was unsure if I was following the path that God intended for me. Was I being a bad advocate for other people with disabilities? Did I deserve this pain? 

I still don’t understand the reason for my chronic pain, but that’s okay. I am only human. I am not God. God knows what is best for each of us, and humans are not supposed to understand His plan. 

Throughout those rather tough years of chronic pain, I hoped that eventually something would help my legs. I didn’t understand why I had to wait so long. I didn’t understand why nothing worked fully to stop my pain.

Now I have so much more appreciation for God’s plan. Those six years of pain made me stronger. And surgery was not just a solution for my pain; the surgery did not cure my CP, but I didn’t want it to. The surgery will allow me to have a better quality of life.

God had a plan that would fully help me. I just didn’t know it yet. 

The surgery turned my left foot so that my hip won’t slowly slip out of socket. My legs don’t touch anymore when I walk, so hopefully I won’t fall. God used the surgery to help me. Sure enough, God had a plan.

If I hadn’t gone through the pain, I never would have relearned how to walk in a way that is better for my body. I have faith in God in a much deeper way now than I did before. Now I know that God has a plan for me, no matter what.

The Lord truly does work in mysterious ways. I don’t have to understand those ways; I just have to have faith.