What I Can Offer as a Disability Advocate

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Every person who lives with a disability faces challenges in this world. I believe the core issue that stands in the way of those with disabilities having a voice that’s heard is simply how the world defines what a disability is. For instance, Vocabulary.com states that a disability is the condition of being unable to perform as a consequence of physical or mental unfitness. The definition itself bothers me because it is so vague and leaves room for someone to make the unfair assumption that those who have a disability can’t function at all. That is both unfair and untrue.

I’m here today to provide my own definition of the word disability. I’m here to tell you that while cerebral palsy is a part of me, it does not define me at all; I’m a perfectly normal college graduate who is just trying to make her way in society. I haven’t been dealt the smoothest of cards, but I have accepted life for what it is and I’ve made the best of what I have. I feel I can offer three very important qualities to the ever-growing disability community: a voice, encouragement, and a spirit of boundless determination.

I cannot use my voice to speak for every disabled person, because each situation is unique and everyone has their own specific sets of challenges to face that vary vastly in types and severity. I do not understand what another person is going through, and they can’t perfectly understand me. But I can and will advocate for others.

First of all, I want to do whatever I can to rid the world of the stigma that tends to be placed on someone automatically just because they are “different.” On my journey, I have done whatever I could to let people know they can accomplish anything they set their mind to. I graduated from college with a 3.6 GPA. I don’t drive, but I don’t let that stop me. I have to rely on family and friends to go where I need to go. I still live life. I cook. I clean. I do laundry. I do everything I’m physically capable of doing.

Encouragement is my main purpose and hope in terms of writing. I used to be very shy, but it has opened doors for me and given me the confidence I need to speak up and help others. I have always lived my life to inspire others. When I was in the seventh grade, I wanted to be on the girls’ basketball team, and I am so thankful that my mom let me dream. Knowing I probably wouldn’t make the team, she still happily took me for a physical, let my sign up and try out with every ounce of love and support she had. I did not make the team, but I was the team manager for a little less than half the season. I had so much fun.

I hope to encourage others to keep dreaming and keep going, because you never know where life can take you. I make accommodations wherever it is necessary; another example besides the driving is that I cannot use a broom. I’ve tried. I can’t hold it right in my hands. My mom solved that problem by buying me a Swiffer Dry Sweeper. I love it. I believe there is a solution to every problem. You’ve got to work with what you’ve got and learn to work around the hard stuff.

Lastly, as an advocate I hope to instill in people a sense of determination. As I’ve stated, I know each situation is different, but anyone can benefit from really being aware of the opportunities that lie before them. Many people are unaware there is a whole community dedicated to advocacy, disability rights, and activism. I am determined and focused on lending my voice to speak on issues, spread the word about all of these organizations, encourage others to get involved, and inspire as much as I can.

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Thinkstock image by Victor Tongdee.

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When I Realized I Shouldn't Hide My Cerebral Palsy

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Back in high school, in addition to my academic studies, I also had physical therapy once or twice a week. Jim was my physical therapist and our sessions were held on the first floor in the main hallway, where people could see me as I followed Jim’s instructions on how to walk.

One day while I was having therapy, my school counselor passed by and saw me walking back and forth, trying to step with my heel down. The counselor approached us and asked me if I preferred to go to another spot where I would not be seen. When I replied that I would, I had no idea what that would lead to. She looked for a hidden place by the auditorium, where I could hardly be seen by others. Jim and I followed her to the spot.

A couple of minutes later, when the counselor left, Jim set up two chairs, one for himself and one for me. I saw the expression on his face and realized he was not happy. Jim looked me straight in the eye and asked me if I was satisfied with my counselor’s suggestion. I replied, “Yes.” I didn’t know much English yet, but Jim’s body language said it all. He was very upset. Then he told me, “Tomorrow, don’t come to school. Stay home.” At that moment I realized I shouldn’t have accepted my counselor’s suggestion.

The next day, Jim came back and apologized. We continued our sessions in the hallway. From that moment on, the counselor didn’t mention anything, even if she saw us in the hallway. As a young adult, I had just learned one of the most important lessons of my life. I learned that although I had cerebral palsy, I shouldn’t hide myself from others. I have to accept myself in order for others to accept me. Now, I realize the irony of the situation, because in spite of having been accepted by my family, at that moment I didn’t accept myself and I wanted to hide.

Jim passed away a few years later. I wish I could go back in time and thank him for what he taught me. Back then I was immature and took for granted the valuable lessons he tried to teach me. Jim wasn’t just a therapist. He was also a friend who always accepted me for who I was.

Ironically, 18 years later I had another personal experience, which makes me think of the day when I wanted to hide. I have big teeth and most of the time, my mouth is partly open, probably due to my CP. I never saw anything special in my smile, but it has always attracted attention from others. People often tell me I have a nice smile. Once, someone told me, “Don’t let anyone prevent you from smiling.”

Since I have a few risk factors that can contribute to the decline of my physical health – CP, my age, and my gender – it is important for me to remain physically active, so I go regularly for physical therapy. One of the other clients at the therapy facility, a sweet lady named Virginia told me recently, “What a nice smile. I love your smile.”

That day after therapy I went back home. I kept thinking of her words and asked myself, how can a stranger be able to see the beauty hidden in my smile, when others tend to only see my disability? The answer was very simple. Virginia focused on my ability to smile and not on my disability — unlike my former high school counselor.

Juana Ortiz’s book “I Made It” is available at www.juanamortiz.com and on Amazon.

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Why I Wish for a 'World Without Labels' in My Life With Cerebral Palsy

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As young woman living with cerebral palsy, I have grown to despise the word “special,” simply because of what it suggests, specifically in the context of disability. I have been approached by people who get two inches away from my face and start talking to me in a significantly louder, high-pitched voice as if I am deaf. The funniest part of those conversations is when I proceed to respond back in full sentences.

I have often wondered what the world would be or look like without labels. This a topic that recently came up in conversation with a good friend of mine, who is a fellow CPer. It inspired me to share my thoughts.

I will never forget the time my mother and I were grocery shopping, and a woman approached her and said:

“Excuse me?”

“Yes,” my mother replied.

“What is your child’s problem?”

I remember the intense anger I felt boiling inside of me as the question escaped from her mouth. In that moment, I spun my wheelchair around so I was facing her, and said with great certainty, “I don’t have a problem!”

While the lady quickly turned and began speed walking towards the checkout, it became obvious that my mother was not in the least bit pleased. In fact, if I remember correctly, she used my middle name.
The older version of me would handle a situation like this one a little differently.

One of the lessons I have learned as a result of having cerebral palsy is that it’s completely OK to be different. The truth is, we all have disabilities. Some are big. Some are small. Some are invisible. And, some are visible. Regardless, these disabilities are part of what makes you who you are. Although at times I have hated the implications of being in a wheelchair, I believe everything in life happens for a reason, and I have no doubt I am exactly the way I am supposed to be.

Perhaps, the younger generation can benefit the most from awareness. For the past year and a half, I have been blessed to work as a childhood development assistant at an out-of-school care program. I absolutely love my job. I have received countless questions about my disability and its manifestations from the children I work with, and I always try to answer them as best as I can. While most of them are questions pertaining to my mobility and how I complete certain activities, I have to admit some of the questions that come out of their mouths are, in a word, hysterical. One child even asked me if my power chair has an airbag.

The children I work with don’t see me as being different. To them, I am just Becca. To me, children are the funniest, most resilient and non-judgmental creatures on the planet. If we all viewed those around us with this mentality, the world would be a very different place.

Awareness ultimately promotes acceptance. I feel it is important to educate society about disabilities. Not only is it important to share with people the effects of disability, but it is also important to share that despite our challenges, we are just like you. People. People who do not want, nor expect to be treated differently. People who have dreams and aspirations for the future. People who are aware of their challenges, yet refuse to be defined by them.

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The Most Beautiful Gift My Cerebral Palsy Has Given Me

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I recently started a new job in Denver at a local nonprofit, and after my first day of work, I was radiating with excitement. I called my mom to tell her all about my day as I made the mile and a half walk home along congested roads. As I was crossing a street, I suddenly felt my body falling towards the gravel. Honestly, nothing tripped me besides my own body: a common consequence of having cerebral palsy. As I placed my hands in front of me to try my best to shield myself, my body slammed into the hard street as a car rushed by me. I forced myself up to make sure I didn’t get hit. It wasn’t until I had reached the sidewalk that I realized I was bleeding all over.

I had scraped up my hand, knee, elbow and a huge portion of my hip – what would eventually become a scar tracing my hip bone. Only the right side of my body was injured: the disabled side. My left side, my non-disabled side, was able to catch itself and remain unharmed. My cerebral palsy only affects the right side of my body, leaving my left side much stronger. The open sore on my hip burned as my jeans rubbed against it to the point that my eyes filled with tears.

Unfortunately, I had just moved to Denver, so I had no idea where the closest bus stop was, and I could not find an available Uber or Lyft to pick me up. With no other options, I continued walking the remaining mile home. I limped more severely the longer I strained myself, and I eventually became worried about whether or not I would make it home without falling again.

Unsure of what else to do, I texted the only other person I knew in the city – my roommate. To my surprise, she got on her bike and rode down the length of the street I was on until she found me about half a mile from our house. She got off her bike, offered me her shoulder, and walked me the rest of the way home. I leaned against her the entire way. Once we returned home, she followed me into the bathroom and got down on her knees to help me wash and bandage my hip – an act that astounded me because it was so compassionate.

I fall a lot because of my disability. It is a consequence of the disability that has become second nature to me. My body is so often covered with scars and bruises that it has become as commonplace as the freckles on my face. I have learned how to relax my body as I fall and how to best catch myself. I know when I will be the least coordinated: when I am tired, when I have been on my feet for a long time, when it is cold outside and when I am in the shower.

It is embarrassing to fall in public and it is often humiliating to require help when you do. Our society embraces independence and strength – especially when you are an adult. As a child, I never had a second thought when I fell and my mom picked me up and bandaged my knees. But when I was a teenager and I would fall, I would grimace when I required a stranger’s kind arm. Needing help from others felt like a confirmation of the negative stigmas of my disability. Every time someone else extended their strength, I felt weak. When I discovered how dependent I was on others, I yearned for a sense of independence, but every definition I had of independence contradicted what I knew about my disability.

Having cerebral palsy has required me to redefine what strength is. Strength does not just mean that you have the physical ability to pick yourself up when you have fallen, but it is also the willingness to ask a stranger for help, even when people often put a wall around themselves. My disability has taught me that there is not just a binary of independence and dependence, but that there is also interdependence. It is possible to live a life of interdependence, where you require others in your life to help you exist and thrive, while also simultaneously seeing yourself as strong and independent.

Through living an interdependent life, I have learned just how kind people can be to one another. I cannot exist without the kindness of strangers – without Uber drivers and people to hold open doors for me, for example. I have had strangers offer me a hand, carry my bags for me, and help me up from the ground. A dangerous side effect of living in a world where asking for help is seen as a weakness is that people often do not reach out to one another because they fear being seen as weak or as a failure. We live in a world where many people would rather suffer silently than tell someone else they are hurting and need help. It is part of why mental illness and disability are so isolating and stigmatizing. But because of my cerebral palsy, I am forced to bridge the divide between myself and the person next to me. I am forced to ask for help, and then I get the honor of witnessing their compassion.

As much as it hurt when I fell on the street that night, I was rewarded by receiving the love and care of my friend. That night represented one of the many moments my disability forced me to question how our society defines success, strength and how we interact with other people. I feel grateful every day that my disability forces me do this.

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Thinkstock photo by LiudmylaSupynska.

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Living 'Between Two Worlds' as a High School Student With Cerebral Palsy

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It wasn’t until I spent a three-hour university workshop examining “advanced organizers as a tool for ascertaining prior knowledge” that I managed to come up with a decent metaphor for my life at school. This metaphor synthesized the sometimes entirely disparate elements of my school experience. Namely, being the “typical girl” and the “girl with the disability.”

I was the center section of a Venn diagram — the jargonized term for the two intersecting circles used to compare and contrast stuff. I was wedged uncomfortably in the middle – I wasn’t a fully-fledged “special kid,” (the most innocuous collective noun to be found in the extensive invective of the teenage girl), but I didn’t always have the social skills and prodigious academic ability to blend seamlessly with the “normal” kids at my school. It was harder because I knew my high school identity was never going to be a static entity. I went between being the instrumentalist, the singer, the Francophile – the “normal” (if slightly nerdy) girl – and having moments where I would make an error in class because of my cerebral palsy, and I’d feel my carefully constructed veneer of normalcy start to slip just a little. So I found myself in that painfully transient space between typicality and difference, with heightened insecurities and no real sense of identity – a pretty dangerous combination in the social minefield that is high school.

Even though I tried my hardest to diminish any reference to the “girl with cerebral palsy side of myself at that point in my life, some days trying to juggle those two sides of myself – this dichotomy of ability and disability – was almost too much to take. Some days, I was almost tempted to ‘fess up about my CP just because it seemed easier. At least I’d fit somewhere, I told myself. Sure, I might have ended up on the bottom rung of the social ladder because of it, and sure, I might have had to deal with a confronting, explicit and entirely unique brand of stigma exclusive to teenage girls, but at least I’d have a place somewhere. Or it could have gone the other way entirely (I doubted it then, I doubt it now, but it was possible), and it might have been a total non-event. I might have worked myself up for nothing, and life might have gone on as normal. Well, as normal as high school life could be, anyway.

I’m obviously never going to know what would have happened one way or the other, but I know that – despite the challenges and fatigue and frustration of having two “sides” in high school – I learned more about myself and what I am capable of than I thought possible. And that, more than anything, gave me an identity.

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He's Nonverbal, Has Limited Mobility. And He Runs His Own Successful Business.

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James Hall, a man with cerebral palsy who communicates nonverbally, starts his own business called Monnie’s Wreaths.

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