Woman using a rolling walker.

How I Learned to Embrace My Walker Again

I have a confession. I used a walker  starting in pre-school until I was 10 years old, when I walked independently without it for a few years. Throughout this time, I remember feeling very embarrassed and ashamed of my walker.

While feelings of embarrassment are a part of life for everyone, feelings of shame about disability, at least for me as a child, were difficult to process. I’m nearly 22 now, and even though I’ve been lucky enough to walk primarily on my own more than most of the time, my recent struggles have caused me to reach for and embrace my walker. It’s a far cry from the shame I felt as a child.

As I write this, I wonder if kids today feel shame about their mobility devices. From what I’ve seen, they have some pretty neat and cool-designed walkers, wheelchairs, braces, etc. I had some of those options as a kid, but they were not nearly as nice as some of the ones I’ve seen in recent years, and they were definitely harder to get.

I will admit I did drag my feet when the mention of using my walker again was brought up during a physical therapy appointment, after I informed my physical therapist of two falls I had that week and the difficulty I was having walking outside on my own. I dragged my feet, but I knew it was for the best and would help me until I got well again.

The first thing I did when I went home was consider what I would need to function independently with my walker. I went to Pinterest looking for accessories. I bought a cup holder, clips for my purse or other bags I carry, a bag for the front of my walker that can double as a purse, and some tennis balls with smiley faces on them for my walker. (All but the walker bag came from Top Glides, and the walker bag was from Amazon.)

Another thing I did was have a friend of my mom’s duct tape my walker in a cool wolf pattern. You can do this, too. Go to stores like Target or Walmart. They usually have large selections of designed duct tape — quite cheap! By simply changing the appearance of your devices to a customized accessory, it makes you more keen to reach for them when needed. After my devices got a makeover, so did the way I thought about them.

Of course, I don’t think it’s that easy. A lot of growing up has happened between being 10 and nearly 22. So, things just change with time. I started to realize how useful my mobility devices were, how much they helped me and enabled me to live my life and do the things I want to do. In time I learned my assistive devices were things to help me, not things that were forced upon me.

This article originally appeared on CP News Today.

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Two women holding hands.

What It Means to Love Someone With Cerebral Palsy

When I was around 4 years old, I was watching “The Little Mermaid” with my mom. We had reached the final scene of the movie where Ariel and Eric are getting married. All of the sea creatures Ariel had befriended, such as her best friend Flounder, celebrate her love with her. My mom jokingly asked me as we watched the credits, “Ashley, will Flounder be at your wedding?”

“No, I am not going to have a wedding,” I answered simply but firmly.

My mom immediately became confused. After all, most young girls dream of their wedding day – especially with the way all the Disney movies I was obsessed with romanticized them. “Why will you not have a wedding, Ashley?”

“I don’t think anyone would ever want a wife with cerebral palsy,” I responded. Somehow, at the young age of 4, I had already received this societal message that people with physical disabilities do not find their Happily Ever After. I was already convinced I was not worthy of anyone’s love.

This happened nearly 20 years ago, and yet the message still haunts me like a looming shadow just over my shoulder. I still worry about whether or not my future girlfriend will love me once she understands the extremity of my disability – of just how much it already limits my capabilities and how much it will continue to do so as I get older. I worry she will never be attracted to my body that trembles with spastic muscles. I worry she will be repulsed by my disability in the same way I can be.

Whenever I go on a first date, I slightly dread that talk where I have to explain what my disability is – and the way my date’s eyes carefully scan my body, as if looking for it. Whenever I have sex for the first time with someone, I am weary of what my muscles will do and of the possibility of my muscle spasms turning them away. I still have work to do with my self-esteem after nearly 24 years of living with cerebral palsy. How can I expect someone else to see my beauty and worth in a significantly smaller amount of time? But through being in various relationships, I have learned what it means to be in a relationship with someone who has a physical disability, specifically cerebral palsy.

Loving someone with cerebral palsy does not mean you overlook their limitations. It does not mean you ignore the imperfections that make their body unique and different. Loving someone with a physical disability means you love them with their disability. It means you recognize that their disability is a part of them, nestled within their muscles and bones. It means you know every aspect of their disability, and it only makes you want to be that much closer to them.

It means you hold them when they are having muscle spasms or when their joints are
on fire. It means you walk a few paces slower than most other folks do so your partner does not have to walk alone. It means you are with someone who may sometimes loathe what their body does to them, who may be ashamed of what their body looks like – and you cannot overlook that.

Loving someone with a disability means you understand that nothing in life is constant – including our own bodies and very beings. We are always changing and weakening. But when you are dating someone with a disability like cerebral palsy, those changes may happen at a more rapid pace, and loving them means you are attracted to their body during every stage.

Loving someone with a disability means you may be their advocate. It may mean you need to jump on a subway ahead of your partner so you can reserve a seat for them in the crowded car while they are still a few paces behind and boarding. It may mean you sometimes help your partner do daily tasks like cutting their fingernails or opening cans. It may mean you help them find accessible entrances and places to sit, and offer an arm when they need to go up or down stairs. It may mean you fight to make places accessible if they aren’t yet. It may mean you massage their limbs while you have sex so they do not cramp up. It may mean you remind them often of how wonderful their body is despite their limitations, even when they do not see it themselves. It means you become a physical and emotional support for your partner – just like any partner in any relationship.

Loving someone with a disability may mean you understand your own body more clearly. It may mean that you end up completely reevaluating and redefining how you understand bodies, strength, beauty and what partnership looks like. This love may allow you to expand your understanding of sex, intimacy, and co-partnership in a really beautiful way.

Most importantly, loving someone with cerebral palsy will mean something different for every person and couple. But no matter what, we are all worthy of love and marriage if that is the path we choose for ourselves. Even though we all deserve this option, many of us came to believe from a very young age that this life milestone will never be attainable for us. And it takes years to deconstruct that notion and recognize it for the lie that it is.

Loving me means you kiss my scars, help me throw away these problematic misconceptions society has taught us, and we learn and grow together every step of the way.

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What I Can Offer as a Disability Advocate

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.

Juana Ortiz doing physical therapy.

When I Realized I Shouldn't Hide My Cerebral Palsy

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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Woman with label on her forehead.

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

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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Thinkstock photo by Grinvalds.

Woman with scraped knees.

The Most Beautiful Gift My Cerebral Palsy Has Given Me

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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