Silhouette of woman, close-up.

7 Lessons Cerebral Palsy Has Taught Me

They say life is what you make of it; I can’t agree more. We can easily let our struggles control our life. I live with a disability by the name of cerebral palsy. I admit it’s not easy, and it can be easy to just focus on the negative aspects of life with it. By doing so I believe it will just make things worse. I have learned that it helps to have a positive attitude.

I believe CP has helped me see life differently. It has taught me some things.

1. Be compassionate. Since I am very aware of how it is to struggle physically, I believe I have compassion for other people struggling physically.

2. Enjoy the simple things in life. My disability prevents me or makes it difficult for me to enjoy certain activities. I came to terms with it by enjoying what I’m able to enjoy.

3. Be creative in doing tasks. I can’t do most tasks in the traditional way. I have to come up with a new way to perform them.

4. Be stubborn, or better yet determined. It can be easy to get discouraged when I have difficulty accomplishing something, but I either have the choice to be defeated by it or continue pushing until I succeed.

5. Pity is useless. Throughout my life I have received pity from people because of my disability. It only made me feel like something was wrong with me.

6. Content of character is more valuable than physical content. Most people see my disability first, instead of the person I am. Because of this I have learned to not make assumptions about a person based on their physical characteristics.

7. Have resilience. Life with a disability can be challenging in many ways, but one gets used to it. I believe this has helped me to have resilience for other challenges.

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Alexis Nichols.

How I'm Breaking the 'Disability Mold' to Be Myself

Living a life like mine, you get to experience so much joy, so many wonderful opportunities and exceed so many expectations. I wouldn’t trade my cerebral palsy for the world! I am truly thankful for the opportunities I’ve had to educate people, and being able to have a positive impact on other people’s lives. I have an understanding of a different side of life (the medical world) that most people wouldn’t, which in turn has made me appreciate the simple things in life that are so often taken for granted.

I know some may look at my life and say I’m unlucky or feel sorry for me, but I feel sorry for people who don’t see my life the way I do. It is a blessing worth every hardship I’ve ever gone through, because I know when I go to sleep at night that I have changed the way society views people with disabilities, and I am a leader and advocate in this very big world that will one day be changed. I know my purpose in life. I know why I am here, and to me that is a gift far greater than anyone could ask for in a lifetime.

My cerebral palsy was a birth injury, so it’s the only thing I know. In the same way as most people know how to get up and walk, I know how to get up and walk with my walker. I don’t feel like I’m missing out on anything because this is the only way my body knows. Yes, it may look hard to someone on the outside, but for me, it’s just my “normal.” Sometimes people will ask, “Is it hard to walk with your walker?” and my response is “It’s a whole lot easier with it than without it!”

I started using my walker at age 2, and it was then that I started to change some people’s perceptions of people with disabilities. Imagine a 2-foot tall child with a bright blue frame around her as she made her way into the grocery store. How often is that seen? Not very often. Humans tend to stare when they see something uncommon, so just by having people look at me I started to change their perceptions.

Anyone who was lucky enough to pass me on the street, or knew me well enough to know my middle name, always mentioned my never-fading smile. I had what most people would think is a reason to be sad and feel bad for myself, but I didn’t see a reason not to smile and laugh. I believe that you define your disability, your disability doesn’t define you! You have the power and ability to create whatever image of it you would like it to be; it’s all in the way you carry yourself, through the actions you show and the words you speak. That’s why I embrace questions and smile at the stares, knowing not everyone has seen or knows a person with a disability. I want to educate people, letting them know that having a disability is not a bad thing or something we should be afraid of!

I think sometimes we are conditioned to not ask questions, to not talk about a person’s disability because it’s “bad,” or if we do it means that’s the only thing we see in them. But I don’t believe that at all. We need to stop being so afraid of the word “disabled.” We need to stop treating it like it’s a bad thing and that no one should talk about it, because how else are we going to make change?

I also think many limits are placed on people with disabilities, some unknowingly. Mainly, this is due to preconceived notions society has about people with disabilities. That if you have a certain disability then you “must act this way” or you “must not be able to do this.” I call that a “disability mold” and have not conformed to it at all.

Growing up, I saw no reason for me to be treated any differently than anyone without a disability; therefore I created equality for myself. I always did everything everyone else did without ever giving my walker a thought. Or maybe I did, and just didn’t care… I tried out and made the cheerleading team, I did horseback riding and went surfing, I auditioned for parts in plays not written for people in walkers… I went out into the world unashamed of who I am to show that no matter your circumstance, you have the ability to live the life you want.

There are many ways I have chosen to live my life that some people in the disability world don’t agree with. One is that I do not wear AFOs (leg braces) and I wear heels most of the time. Apparently, there’s this unwritten rule somewhere that if you have some issues walking, you probably shouldn’t wear heels. That still hasn’t registered with me yet (ha ha) and if you had something to hold you up as you walked, I bet you’d walk in heels, too! While I may walk slightly more appropriately in AFOs, I have never felt comfortable or confident in them. They hurt when I put them on, and when pain interferes with quality of life and confidence is taken away, they really are no help at all.

Most people might just agree with the experts and go on with their lives, but not me. It doesn’t mean I am not respectful of their opinions or never listen, it just means I have learned I have the power to say “no,” and live in whatever way works best for me at the time, no matter what anyone else says.

Sometimes I think people get so caught up in living the life other people think we should live, the one society expects for us, that we forget we are in control of our own life. It is OK to say no, to stand up for what you believe in and to make the life you want.

In this life, people will tell you that you can’t. That you won’t. That you will never be able to accomplish your dreams. They will label you and place limits on you based on what you are given and how they think you should live. It is up to you to defy them. It is up to you to say “OK, this is the life I have been given and this is what society says I should be, but if I don’t want to live that way, I don’t have to.”

I have proven that time and time again, and I am here to share my belief that it can be the same for you. Rely on your sense of self to know what you are capable of and how far you can go. Just because you are given a certain circumstance with a predicted outcome, that doesn’t mean it’s how it has to be. Your life starts with you, and you have the ability to make it anything you want it to be.

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When My Daughter With Disabilities Said She Wants to Be a Published Author

As anyone who has followed my writing for any amount of time knows, we have long had our struggles with the public schools refusing to accommodate our children’s disabilities. Much of my more recent writing was to express this frustration to help raise awareness of the problem.

Since we decided to homeschool the children two years ago, I’ve mostly devoted my time to teaching and researching ways to further help my children at home. I’ve also become a writer for The Mighty, elaborating on certain aspects of what it’s like to live with disabilities.

My daughter Mariah has struggled with emotions related to living in an orphanage for the first four years of her life. She has also been incredibly frustrated by how she was treated while she was in public school. She felt singled out, different, and misunderstood.

I am so proud of her for wanting to write about her experiences. Owning your story is a huge part of the healing process. Mariah wants to “Be a famous author!” She has already written a lovely recounting from her point of view about her life prior to being adopted, what it was like during the process and after she came home.

Mariah plans to write more books about the other disabilities she lives with so children can gain a better understanding of their peers. Some of her plans for future book titles include:

“I Have Dyslexia!”

“My Legs Aren’t Broken, These Are AFOs”

“Kids Have Strokes, Too”

Please help by sharing her video so we can find a publisher who can help her reach her dream of becoming “a famous author!”

Here is a preview of her book about her adoption story.

This story was originally published on The Johnson Journals.

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Learning to Tell My Story as a Woman With Cerebral Palsy

It was after another defeating job interview, trudging down the rainy streets of Chicago and wondering what to do next. Discouraged and needing to decompress, I found a nearby Starbucks and dove into Mandy Hale’s book “Beautiful Uncertainty,” about graciously embracing the unknown and doing uncomfortable things for a greater purpose. I instantly saw myself standing up in front of a large crowd and talking about the physical challenges that I’ve overcome, although the location and audience were unclear. The vision brought tears to my eyes, and has stuck with me as I’ve navigated the obstacles of trying to break into a difficult career field. As time has gone on, I’ve begun to wonder if being involved with marketing and social media is only a small piece of a larger puzzle.

My life in itself is unconventional, especially living with cerebral palsy, a movement disorder that was the result of my premature birth. At some point a part of my brain was deprived of oxygen, the part that tells me how to walk and move correctly. I do physical things a little bit differently, use up energy quickly, and my muscles tighten up frequently. Some notice it right away, and others don’t find out until the subject comes up in conversation.

Acceptance has occurred in phases; my parents were very open about the reality of my circumstances, but encouraged me to work hard and never give up. As a teenager I began to resent it, believing it was the sole reason I struggled with making friends and having a social life. Once I got to college, I thought I could ignore it completely, but it became the constant pink elephant in the room that caused ignorance to rear its ugly head. I learned how to be independent, but mostly because I was afraid of my needs getting thrown back in my face. It was as if I had something to prove, and I had to prove them wrong. To this day I have to work at not living so defensively, and allowing myself to be loved.

At 25 years old, I do what I can with the best of my abilities, although I’ve become more aware of what is holding me back. I’ve been told I can be a positive example of what it means to rise and thrive while having a disability, but the task itself is intimidating. If I discuss it openly, I’m either throwing a pity party or trying to take advantage of certain privileges. If I’m silent, I must be ashamed and am trying to avoid it at all costs.

I feel honored to be considered an inspiration, yet have never liked the idea of telling people how to live or what to do. I’ve never been in their shoes, so who’s to say they’re not already doing their best? I don’t want to make blanket statements when we all experience life on different levels. But telling one’s story is not the same as preaching a lifestyle; I can tell the truth and let those listening take away whatever they want from it. My goal is not to change the way anyone thinks, but to at least give them something to think about.

It is said that to tell your story, you have to own it. But how do you own it without making it your entire identity? I’m still not entirely sure, but it might involve acknowledging what is, and figuring out how to boldly move forward. There are things that I debate whether or not to share in my writing or online because I don’t want to reopen wounds, or hurt others involved. I want to be authentic and genuine, but I also have to decide what is sacred, what truly is mine to tell and what isn’t.

My biggest fear is being completely vulnerable (especially with a romantic partner), only for that person to walk away because my challenges and limits are too much. Yet I also find peace in my faith, in how God made me; it’s not about “fixing” myself for others, but allowing my heart to be changed and molded, and being bigger than my body. I am not a victim, but I am not only a survivor. More than anything, I’m resilient. I’m a child of my Creator, and a human being that has both much to offer and much to give.

I am a writer by nature, but I feel that my ultimate passion and purpose is to connect with those around me and build them up. It’s definitely scary at times, but it comes from a longing of wanting to know and be known. It might be through writing, public speaking, or having a simple conversation, but if I can help at least one person in some way or another, then the risk of rejection or criticism is worth it.

My story is not complete; it is always evolving through different experiences and new perspectives, which gives me the confidence and strength to talk about it. I don’t know what my future holds, but I intend not to waste the gifts and opportunities that are given to me.

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Adaptive scissors.

The Adaption That Wasn't 'Fantastic' for Me as a Child With Cerebral Palsy

It was the scissors. They were the first concrete manifestation of my being “different” that I could remember. I remember equally well the teacher’s reaction when she handed them to me. Her expression radiated pride and superiority, and her smile was irritatingly smug. She obviously thought she’d won the battle that was trying to support annoyingly stubborn, relentlessly determined little Erin. I could see her thinking, I’ve done it! I’ve finally found a modification that works for this kid!

Clearly, she didn’t know me very well. Just because they were purple and glittery (an undoubtedly premeditated, ridiculously transparent design decision, targeting primary school me’s favourite color and pattern) in no way meant that I was going to use them. Instead of an effective “adjustment” to help remediate my highly dodgy fine motor skills due to cerebral palsy, I saw this pair of scissors as an artifact of my difference.

In what I presume was a magnificent fluke, for the many worksheets I had to cut and glue in class (my primary school education was a monument to the “chalk, talk and worksheet” method of teaching), I somehow managed to get away with using the plain blue scissors that every other kid in that class had, sparing me the humiliation of using my glaringly different, albeit “easier” scissors.

Now, at this point I have to add that these “easier” scissors, in addition to being starkly different from everyone else’s in both color and decoration, had the word “fantastic” emblazoned across them. Even now, looking back, I don’t understand why. My cutting was obviously not fantastic – what sort of ironic statement about my skills were these scissors making? Outside the confines of the classroom, though, especially when I went to my weekly occupational therapy sessions, I wasn’t always so dismissive. These scissors were made with a convenient little yellow lever that helped them snap open automatically as I cut stuff — hence, their qualifying as an appropriate aid for my life at school. And although I hated to admit it, they did make my cutting easier. My binder of very thick, very black BlackLine Masters (coloring pages) that I had to complete at these OT sessions weren’t always ending up as mutilated as they might have been with my prized, “typical” blue scissors.

So now I had a decision to make – I could either use the purple scissors, improve my fine motor skills and get over this “scissor stigma” I had built up in my mind, or I could continue with my old faithful blue scissors, with very messily trimmed worksheets, but with my façade of typicality still intact. I’m sure you can guess which path I chose — I can’t overstate how stubborn I was at school. Not much has changed now, come to think of it. And even though it might have been easier to use the ironically “fantastic,” modified scissors, they just didn’t cut it when it came to helping me do the one thing I wanted to do at school – be like everyone else.

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People boarding a bus.

When a Bus Passenger Didn't See My Disability ID Card

When I was living in Portland, OR and waiting for my future husband Kevin’s visa to get approved, I had a psychiatrist who had an office downtown on Taylor Street. I traveled to my appointments with her using public transit. I had an ID and lanyard identifying myself as having the ability to get half-priced tickets. One particular appointment day, I decided to dress up, because I had been feeling utterly depressed. Of course, I would figure out that I am someone who likes to be able to touch their partner after getting into a long distance-by-circumstance relationship.

I decided I should make an effort and dress up. Not usually a big deal, right? But I had spent pretty much my entire life, save for short bursts of effort, dressing pretty plainly. I explained this to myself by saying I liked solid colors and didn’t like prints or flashy clothes that much. It really had a lot to do with the fact that I had worn a leg brace on my left leg until I was 14 years old. I had to wear two different sized shoes to accommodate this beast, and a side effect of its prolonged use is that my left leg is two centimeters smaller in diameter than my right leg. I spent a great deal of time wearing baggy clothing so I could hide it.

Currently, I am trying to figure out what my actual style is, what my style voice is. But for now let’s get back to public transit in Portland. I’m dressed up, I am wearing a skirt, probably one of ten that I have owned in different periods of my life. My shoes don’t look too shabby, and my shirt is form fitting. I look good, in my opinion.

I board the Max train and head downtown, then I switch to the bus. When you have a lanyard and ID like the one I had, you get to kick people out of the front of the bus for a seat. I did, and it gave me great joy doing this. I take my seat at the front of the bus and across from me is a gentleman in a mobility device. I sense that he is not happy with me being there. My lanyard is hidden by my coat, and his is hanging from his mobility device. He never says a word to me, only staring quite disapprovingly. I get the message, and I open my coat to show my lanyard. “I’m part of the tribe,” I try to communicate to him with my eyes. He softens instantly, and tells me to “have a nice day” as he is leaving the bus.

I have recalled this day from time to time, thinking about how people with disabilities are expected to look. The burden of proving our disabilities falls on our shoulders, and that day I learned that, at least according to some, we are not allowed to dress up. I am left wondering again how much I allow the expectations of others, perceived or real, and the expectations of society, perceived or real, to influence how I express myself. I am a work in progress. I intend to be seen and be heard. I intend to break free from this, and just be “myself” evolving, changing and growing along the way.

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