Tag Archives: Empowerment

Changing the Face of Disabilities.

24 Feb

Last semester, I had a professor who I really connected with on a more personal level. Though we discussed my role as a student, we also discussed a role I didn’t think I could inhabit so fully: my role as an advocate, especially for those with disabilities. One evening following my night class with this specific professor, we discussed my life, my future, and all the many obstacles I’ve faced to get to where I am today. It was an incredible conversation, one in which I truly felt heard, and it’s something I will never forget.

Specifically, after much discussion regarding my Cerebral Palsy, my past of physical therapy, surgery, pain and hardship, my professor mentioned how she had been wanting to talk about my disability with me for quite some time but didn’t know how to broach the subject with ease. However, once I completed a project for her class in which I discussed the topic of disability discrimination, she knew I was comfortable and wouldn’t mind hearing any questions she had.

As we talked about my life and my future aspirations of writing my memoir and becoming a social worker, I slowly began to realize I had gained a mentor. I had gained someone who not only supported and believed in me, but someone who pushed me to look more closely at myself and my potential. Since I have only truly connected on a more personal basis with one or two other teachers throughout my life, this experience was incredible. It gave me a chance to open up, to share my life, in a way I wouldn’t have otherwise been able to do if I hadn’t had the courage to open up about my disability through a big research project which was presented to the whole class. Specifically, during our conversation, my professor said, “Amelia, you have the power to completely change the face of disabilities.”

I have striived to be an advocate for others with disabilities since as a kid, I wished I had had a kind of mentor who I could talk to about the difficulties of living with a physical disability. In my opinion, having the chance to talk to someone who had been there would have really helped me, so I long to be that person for others. Therefore, when my professor told me I have the power to completely change the face of disabilities, I was floored. I truly felt proud to receive praise of such a high honor. The simple fact that someone believed I had the potential to achieve something so lofty was amazing.

Recently, I thought about what my professor said last semester, and how great it made me feel. As I mentioned that conversation to a friend recently, she said, “Amelia, there’s something you don’t see: you already do change the face of disabilities.” I stared at my friend, confused, not understanding what she meant. She explained by saying, “You change the face of disabilities just by being yourself. You bring awareness to what Cerebral Palsy is. You provide special needs families with the hope that it’s possible to overcome incredibly difficult obstacles. But you know what the best part is? You overcome it all with a smile on your face the determination to keep going no matter what.” The wonderful thing is I didn’t see how I was changing the face of disabilities just by being myself. I imagined I wouldn’t be able to do that until I aimed to do something more tangible, something I could point to and say, “Yes, I brought about that change.”

It’s caused me to realize that maybe being an advocate and lifting others up has many parts. Maybe it doesn’t just involve the tangible changes we can point to with pride. Maybe it’s the little things too: the connections I strive to make with the families of children with special needs at my internship, the talks about CP and bullying I’ve given at elementary schools, and the connections I’ve strived to make with others with special needs through my blog.

Recognizing my abilities to change the face of disabilities definitely isn’t easy. Maybe it takes hearing it from others before I start to believe it. However, as I’ve been told, I’m already doing it just by being myself. As of now, there’s only one way to go in order to continue along this path: forward. I don’t know all the answers. I don’t know the secret to living life with a physical disability without letting it pull you into despair and self pity. But I do know one thing: All I have ever been is myself. Maybe that’s the only secret that matters.

Own your story.

20 Apr

Owning our story can be hard but not nearly as difficult as spending our lives running from it. Embracing our vulnerabilities is risky but not nearly as dangerous as giving up on love and belonging and joy—the experiences that make us the most vulnerable. Only when we are brave enough to explore the darkness will we discover the infinite power of our light.-Brene Brown

When I came across this Brene Brown quote a few days ago, I couldn’t help but realize how much it applied to my certain circumstances. Not just the overall situation of living with Cerebral Palsy, but the more recent circumstances of realizing that I must now face the emotions which resulted from my recent return to physical therapy. Though it would be so much easier to resist thinking about the emotions and memories that returning to physical therapy brought up for me, I know that I must face them if I’m going to be able to move forward.

Throughout my life, I have heard people tell me how awesome it is that I don’t let my CP define me. According to my CP doctor, I “make it look easy.” Though I do understand that most people are trying to compliment me, it’s also hard for me to believe them in the full sense of the phrase. Though I don’t ever introduce myself as “the girl with CP,” I often wonder if that’s what others are thinking, specifically people I have just met. Overall, I try not to let myself focus too much on all of the difficulties it brings, because if I did that, how the heck would I still be able to find joy in the little things? However, at the same time, my CP affects me on a daily basis. Every day is hard, and every day I am reminded of how different I am from those around me. At the same time, I am reminded of how far I’ve come, and that’s where “owning my story” comes in.

Though I began writing my memoir in order to help myself come to terms with what I’ve faced and to help others in similar situations, I have also just wanted to shed a light on just how many of us are struggling in ways people may not truly understand. Putting all the benefits and support aside, “owning my story” through writing about it and essentially saying “Yes, this is who I am, and I am damn proud” has been the most frightening, scariest, most frustrating and overall hardest thing I’ve ever done. In all actuality, it sucks, but it’s helping me. Truthfully, it reminds me of the idea that you’ve got to hit rock bottom before you can truly understand your own strength. It’s cliché, but it’s also true. In many ways though, I feel as if trudging through this first draft of my memoir is similar to hitting rock bottom, over and over again.

Despite the frustrations of “owning my story,” it’s my way of being the voice of so many others who aren’t able to express what it’s like living with a disability. If writing my memoir means I can give a voice to a few of those people, then I will plunge into the darkness of it. Just because there are people who aren’t able to express the emotions connected with what they have experienced doesn’t mean that they shouldn’t have a chance to still be heard. If anything, all of those people deserve it a little bit more. After all, every one of us has so much to learn from each of the people we come into contact with, so why not start by owning the experiences we’ve faced, no matter how scary and painful?

The search for understanding from a disability perspective.

5 Dec

Since I didn’t have someone who understood my pain during my years of intense surgeries and physical therapy for my Cerebral Palsy, I talk a lot now about wanting to be that person for others with CP (or other disabilities) who are going through similar situations. Though I do know that I want to be the understanding ear for those with physical and/or emotional difficulties associated with their disability, it’s only recently that I’ve begun to realize that there still isn’t someone to fill that role within my own life.

Though it is reassuring to know there are so many others who are in similar situations, most of the people I have connected with (mainly through my blog) are in the phases of difficulty I was in many years ago: the intense physical therapy, the surgeries, the nights of crying because all you want to understand is why you have to be different from everyone else. In order to be the CP advocate that I wish to be for others, I’m still looking for an understanding ear, but specifically someone who has already faced the difficulties I’m currently dealing with. However, I’m beginning to realize that finding someone who understands isn’t just hard when you’re a kid. It’s hard at every phase of life, no matter how much you may have progressed from where you were on day 1.

However, it’s also important to make a distinction between someone who wants to understand and someone who can understand. My support group of friends are all people within my life who love me and want to understand the pain and difficulties I have faced and continue to face on a daily basis. However, despite their good intentions regarding every aspect of who I am, none of them fit into the category of being someone who can understand. Though I do not blame them and am still very appreciative of all they do for me, I still want someone who can understand. I want someone who knows exactly what I mean when I’m talking about the pain of post-op physical therapy or how hard it is to simply summon the strength to get out of bed in the morning to continue the daily battle that is associated with living with a physical disability.

Though it may take me a very long time to find someone who can act as a disability role model within my own life, I know the wait will not stop me from being that person for so many others. The recent realization that sharing my own story can help to inspire so many others to keep on going is incredibly special to me. I have seen from my blog posts how much I have helped others who also have CP (and even people who don’t have any kind of disability) to simply keep on going. In so many ways, that is all we can do. Though there many not be too many people who can understand, I will continue to share my story in order to help those who want to understand. It is through those who want to understand that change will come. Since the central part of the search for understanding lies in the need for acceptance, helping those who want to understand is the first step towards achieving some form of acceptance within the current society in which we live.

TED Talk by Sarah Kay: If I should have a daughter.

2 Dec

Sarah Kay: If I Should Have A Daughter

If I should have a daughter, instead of “Mom,” she’s gonna call me “Point B,” because that way she knows that no matter what happens, at least she can always find her way to me. And I’m going to paint solar systems on the backs of her hands so she has to learn the entire universe before she can say, “Oh, I know that like the back of my hand.”

And she’s going to learn that this life will hit you hard in the face, wait for you to get back up just so it can kick you in the stomach. But getting the wind knocked out of you is the only way to remind your lungs how much they like the taste of air. There is hurt here that cannot be fixed by Band-Aids or poetry. So the first time she realizes that Wonder Woman isn’t coming, I’ll make sure she knows she doesn’t have to wear the cape all by herself because no matter how wide you stretch your fingers, your hands will always be too small to catch all the pain you want to heal. Believe me, I’ve tried. “And, baby,” I’ll tell her, don’t keep your nose up in the air like that. I know that trick; I’ve done it a million times.

You’re just smelling for smoke so you can follow the trail back to a burning house, so you can find the boy who lost everything in the fire to see if you can save him. Or else find the boy who lit the fire in the first place, to see if you can change him.” But I know she will anyway, so instead I’ll always keep an extra supply of chocolate and rain boots nearby, because there is no heartbreak that chocolate can’t fix. Okay, there’s a few heartbreaks that chocolate can’t fix. But that’s what the rain boots are for, because rain will wash away everything, if you let it. I want her to look at the world through the underside of a glass-bottom boat, to look through a microscope at the galaxies that exist on the pinpoint of a human mind, because that’s the way my mom taught me.

That there’ll be days like this. “There’ll be days like this, my momma said.”

When you open your hands to catch and wind up with only blisters and bruises; when you step out of the phone booth and try to fly and the very people you want to save are the ones standing on your cape; when your boots will fill with rain, and you’ll be up to your knees in disappointment. And those are the very days you have all the more reason to say thank you. Because there’s nothing more beautiful than the way the ocean refuses to stop kissing the shoreline, no matter how many times it’s sent away. You will put the wind in winsome, lose some. You will put the star in starting over, and over. And no matter how many land mines erupt in a minute, be sure your mind lands on the beauty of this funny place called life. And yes, on a scale from one to over-trusting, I am pretty damn naive. But I want her to know that this world is made out of sugar. It can crumble so easily, but don’t be afraid to stick your tongue out and taste it. “Baby,” I’ll tell her, “remember, your momma is a worrier, and your poppa is a warrior, and you are the girl with small hands and big eyes who never stops asking for more.” Remember that good things come in threes and so do bad things. And always apologize when you’ve done something wrong, but don’t you ever apologize for the way your eyes refuse to stop shining. Your voice is small, but don’t ever stop singing. And when they finally hand you heartache, when they slip war and hatred under your door and offer you handouts on street-corners of cynicism and defeat, you tell them that they really ought to meet your mother.

When the stars align…with Easter Seals UCP.

1 Dec

Easter Seals UCP is a non-profit organization that supports families dealing with disabilities and mental health challenges. Over the past few months, I have been researching different Cerebral Palsy organizations to see if I could come across any information tailored towards adults with CP. Though I still haven’t found much useful information, I did find Easter Seals UCP. Upon looking at their website and the numerous blog posts by families dealing with disabilities, I was inspired. I was inspired not to focus on my own physical issues at the moment, but instead chose to focus on something that has just been coming to life since I started sharing my story of CP: my role as an advocate.

If you would have told me two years ago that my current primary focus would be using my own story and my personal experience with CP to advocate for kids with disabilities, I probably would not have believed you. I have never imagined that talking about my own struggles would be something I’d be able to do…much less want to do. However, since that is how things seem to have evolved, once I realized there were numerous Easter Seals offices across every state, I knew I had to get involved. The need to get involved led me to find out if there was an Easter Seals UCP office in Asheville, and I found it.

After connecting with some people in the Easter Seals UCP Asheville office through email and phone conversations and getting such a positive response regarding my desire to get involved within the Asheville community, I could not be more excited. At this point, I’m unsure how things will progress. However, after learning that the Asheville office works directly with families in the community, I asked if there had ever been any kind of program implemented that deals with the emotional barriers that a disability presents. Though there isn’t currently a program in place within the Asheville community that deals with the emotional side of disabilities, I told the Easter Seals Asheville office that I felt it would be incredibly beneficial for the community and that I’d be willing to help in any way I can. Long story short, I’ll be meeting with those at the Asheville office to discuss ways in which this kind of program could be implemented as well as general ways in which I can work with Easter Seals as a CP/disabilities advocate within the community.

Words cannot even express how excited I am about this possible opportunity. However, I know that without this blog and the incredibly supportive community of WordPress, I would not have been able to reach the point of talking so openly about my disability and what I’ve faced. For my entire life, I have struggled with the concept of belonging. However, I guess the part of my life that I was trying so hard to escape from was where I needed to be all along. Even though I didn’t have the opportunity to talk with someone who knew what I was going through during the years of my intense surgeries and physical therapy, I want to be that person for other kids with disabilities, and I want them to know they don’t have to go through it alone. Therefore, to all the families dealing with disabilities and the entire Easter Seals community, thank you. Thank you for helping me find another dream to strive towards.

Copyright: Easter Seals UCP.

Copyright: Easter Seals UCP.

It’s an everyday battle.

15 Nov

When I started writing my memoir of living with Cerebral Palsy last January, in the back of my mind, I think I believed that I’d be able to write everything out and then I’d feel tons better or that my past wouldn’t control my thoughts so much. No, my Cerebral Palsy doesn’t define who I am. However, I’d be lying if I said that it didn’t have a constant effect on my thoughts. When I first starting writing out the hard memories, it hurt, but it felt good too. It made me cry to bring up so many memories that I didn’t want to ever look at again, but it also brought me closer to those around me. My mom and I started getting along better. My friendships improved. For the first time, I could honestly say I was completely myself because I wasn’t allowing myself to hide behind the pain that dominated my life for so many years.

However, despite the beginning benefits of writing about my life, currently I don’t always feel like the benefits outweigh the pain that still lingers from my past. Truthfully, this wouldn’t be so hard to handle if things weren’t so physically hard for me lately. I’m falling more, but it’s not even the falls themselves. It’s the fact that I’m able to feel them before they come. My muscles get super tight, I start to walk on my tip-toes, and I get nervous. Since I know that I am about to fall, I become afraid to move. However, the more nervous and afraid I get, the more I tense up, which increases the likelihood that I’ll fall in a number of minutes. It’s heartbreaking, truthfully. Heartbreaking in the sense that I know I’m only 20 years old. I don’t even want to imagine how my muscles will be cooperating 10 years from now.

Even though I may have finally faced the pain and memories that dominated my past, will I be able to deal with the struggles that are in my present just as easily? Will I have to wait 20 more years before I can come to some kind of understanding? Truthfully, will I ever understand? Will any of this ever make sense? On the good days, the days that I’m happy and I have people around who love me, I’m able to stay pretty upbeat and optimistic about my situation. However, on the bad days, the days when I’ve already fallen 4 times and my back hurts, all I want to do is sit on my bathroom floor and cry. Though I know that may not seem like the greatest decision, what do you tell the person who’s been strong for so long? My entire life, the gusto has pushed through. My pure love of life has pushed through. However, as the years go by and the back pain and falls increase, it’s hard to carry that same level of strength. I’m trying though. I’m trying because I want to find enjoyment in my life, and I know there are so many people who love and support me and want to see me succeed.

I think what many people don’t realize is that living with Cerebral Palsy is an everyday battle. It’s not as if I can say, “Oh, my past is behind me. The hard part is over.” Though that may be true and though I am relieved to not have to undergo any surgeries right now, that doesn’t mean things are “easy.” I wake up every morning with back pain. Though I fall asleep best on my stomach and I’m not a restless sleeper, it becomes a problem when I wake up with a stiff back and normally stiff legs. Some days, it’s hard to walk easily. On mornings when I wake up extremely stiff, I debate whether I should crawl to the bathroom rather than risk falling and getting yet another bruise. Even though the bruises normally end up in places that people aren’t able to easily see, that doesn’t mean that they aren’t there. Though living with Cerebral Palsy may be something that I’ve gotten used to just because I’ve had no other choice but to adapt, that doesn’t mean that it’s still not a struggle to simply be happy. In all actuality, it would be so easy to slip into pity and just curl up in my bed and cry. For me, every single day is a battle. But I get back up, even if it means that I’m still crying.

For anyone needing a pick-me-up.

25 Oct

Though it’s Thursday, which is only one day closer to Friday (and the weekend), the light at the end of the tunnel that signals the end of this incredibly hectic week seems very dim. At this point, I am up to my eyeballs in notecards that cover Developmental Psychology, Community Psychology, and Human Biology. Whoever thought it was a good idea to give me 3 exams that are back-to-back on a Friday is a complete nut job.

However, as I was taking a quick break from trying to memorize buckets and buckets of information last night, I was reminded of a short, but effective motivational video that I saw about a year ago. It’s called “Jessica’s Daily Affirmations,” in which a little girl named Jessica is standing up on her bathroom counter and looking at herself in the mirror as she proceeds to state everything she loves about her life. Even though it seems a bit silly, it is a video that never ceases to put a smile on my face and inspire me to get my work done.

Even though I may never have as much guts as Jessica (as well as not being a cute little girl who can easily get away with standing on her bathroom counter shouting positive things at herself), I have always been a lover of quotes. I don’t know what it is about reading others words regarding the difficulties of life, but it seems to help. So, even though you won’t catch me shouting positive phrases into the bathroom mirror every morning, don’t be surprised if you see some of the following quotes written on post-it notes that have started to accumulate on my bathroom mirror and other places that strike my fancy.

Don’t ask what the world needs. Ask what makes you come alive and go do it. Because what the world needs is more people who have come alive. -Howard Thurman

Life is either a daring adventure or nothing. -Helen Keller

We must let go of the life we had planned so as to have the life that is waiting for us. -Joseph Campbell

Happiness is the consequence of personal effort. You fight for it, strive for it, insist upon it, and sometimes even travel around the world looking for it. You have to participate relentlessly in the manifestations of your own blessings. And once you have achieved a state of happiness, you must never become lax about maintaining it. You must make a mighty effort to keep swimming upward into that happiness forever, to stay afloat on top of it. -Elizabeth Gilbert

Do not let your fire go out, spark by irreplaceable spark in the hopeless swaps of the not-quite, the not-yet, and the not-at-all. Do not let the hero in your soul perish in lonely frustration for the life you deserved and have never been able to reach. The world you desire can be won. It exists.. it is real.. it is possible.. it’s yours. -Ayn Rand

I love to see a young girl go out and grab the world by the lapels. Life’s a bitch. You’ve got to go out and kick ass. -Maya Angelou