Putting the Ability in “Disability”

The greatest glory in living lies not in never falling, but in rising every time we fall.

 ~ Nelson Mendela (1918 –) quoting Marianne Williamson

LAST YEAR, a bill was passed through the U.S. Senate recognizing and establishing an important milestone for disabled individuals—and aimed specifically at individuals living with the neurophysiological condition cerebral palsy.

Now I will be honest here.

I am well aware of the stereotypical images of paraplegics and the likes portrayed in mainstream media, and while it is true that these individuals may be intellectually slower than others and have more difficulty moving around, I am not here to openly criticize anyone with cerebral palsy.

I should know. I have it too.

I know what it feels like to be teased by other kids my age just because I live with this disability, but I also admit I’ve done it to others years ago too. And I apologize for all of that because I should and I do know how that feels.

Moreover, living with cerebral palsy is no small or easy task, but—with patience, time and lots of physical therapy—CP is overcomeable.

But allow me to elucidate on what the condition looks like for everybody who doesn’t know what it is. Cerebral palsy, according to medical sources, is “a disorder of movement, muscle tone or posture that is caused by injury or abnormal development in the immature brain, most often before birth.”[1] In other words, it’s a condition that affects one’s muscles, making it harder to walk, sit, stand, run, jump etc; and it is also very true that it can develop shortly after birth and can be diagnosed within a few short years. I was diagnosed at three months, with a secondary diagnosis of spastic diplegia at three years.

And even though I used to think I was the only one dealing with these issues, once I started searching, I gradually found millions of stories about millions of kids who all have what I have and that’s why I aim to be another avid cerebral palsy advocate.

Earlier this month, my curiosity to find other CP stories peaked yet again, when—after stumbling through pages upon pages of Google search results—found one story from overseas in Fuyang, Anhui Province, China.


As you will soon find out, the kid’s name is Yuan Weiwei, and man, just to see him walk around and smile reminded this 19-year-old veteran of his own childhood when he did the same. And the video almost brought me on the verge of crying tears of joy a few times because I soon realized, this is my story too. Almost.

Part IV of this series was the hardest of the videos. It also turned out to be my favorite.

The task immediately became a bit daunting when we found out our subject who we were meant to be profiling — couldn’t talk much.

While Weiwei was not afraid of the camera, his speech and dialogue were not developed enough to get entire sentences out of him. He also was not the most mobile of our subjects. He had trouble getting around, which made our filming locations limited.

However, even given these limitations the story developed in front of us into a rather heart warming story. The camera ended up turning to his mother to help drive the narrative, while Weiwei would maintain the visual story.

After a couple different versions of the script, we finally settled on the version you see here.

The story in itself is actually quite sad. However, the mother’s continued support and optimism is pretty inspiring.

~ Jonah Kessel, an excerpt from Part IV: Hello, My Name Is…ǀ Normadically Curious Visual Thoughts

As tragic as it is to experience the hardships one disabled child has to go through and how much one family has to pull together to make it through, thankfully, it’s not all too bad once you get the hang of it. Trust me, I also have years of experience under my belt.

And thankfully, I’m not alone either.

In Oklahoma, I found another great cerebral palsy brother.

Allow me to introduce David Fraser.

Fraser was a premature baby born in a hospital without a single incubator. He was rushed to the nearest hospital equipped with an incubator immediately after he was born. During this 15-minute drive, the lack of oxygen in his brain caused permanent damage — mild cerebral palsy, a condition that alters a child’s physical development and motor skills.

In the midst of vulnerability, Fraser displays independence. He picks up things off the floor and opens doors for the ladies, assuring all that he is not as needy as strangers may think. “People relate [to] me [by] how I see myself,” Fraser said. “How you perceive yourself and how you put yourself across, people will relate to you back.”

It’s been 26 years of prayer and faith — a lifetime filled with extra walking effort and extra attention. He still lacks answers, but he is certain of one thing. “I have to take the Word of God and filter it to a place where [my limitation] no longer becomes my identity, and He becomes my identity,” Fraser said.

He admits it’s a struggle, having everyone know his prayer and see it unanswered. People fighting with inner battles can easily hide their pain, but Fraser’s struggle cannot be masked no matter how hard he tries. “With me, it’s on the sleeve,” Fraser said. “There is no hiding it. It’s either it’s there or it’s not there, so it always made me feel like I’m seen that way.”

 ~ Sarah Al-Khaldi, an excerpt from Handicapped Student Walks in Faith, Hope

I met David back in March 2011 when I took a college orientation trip to Oral Roberts University in Tulsa, Oklahoma and having the chance to sit down and chat with David one late Friday evening was all it took for us to bond. Turns out, despite having cerebral palsy, he serves as one of the student chaplains on his floor and in his wing and yes, he does take the time to help out his able-bodied friends just as they do vice versa for him. He even offered to grab me a doughnut halfway through our nearly two-hour talk and prayer session, and I thanked him for that as well.

Most importantly, I could tell we both got plenty off our chests detailing our life stories from premature births until the present day, and expressing the joys as well as the agonizing frustrations we similarly experienced despite growing up states apart from each other.

Shout out to John Chau too for introducing me to David in the first place.

God bless you both! 🙂

And so, I would like to take the time to send a message to all the people out there living with cerebral palsy: you are certainly not alone in your struggles. Never think you’re on a one-man journey. Because hey, take an honest look around. There are many others all going through what you’re going through right now too.

And together, we can all overcome cerebral palsy and learn life lessons from it as well.

Weiwei, David, and I certainly have and our time here is certainly not over. We will keep living the way we live until we all go into the ground being our own advocates to those around us and to keep telling others, “It’s not over. Just keep holding on. And when you do, that’s when life is really worth all this.”

Happy National Cerebral Palsy Awareness Day, and don’t forget to wear that green.

I’ll see you all soon.

~ A Fellow Columnist, Josh Chen.

3 thoughts on “Putting the Ability in “Disability”

  1. Wow, Josh, this is a great article, man. very brave. I really can’t think of another adjective to describe it besides “brave.” really well written, and you really connected with me on a personal level. You helped me see your struggle through your eyes, with a message of strength underlying your writing. Josh, you’re a powerful person. You always have been, even if you don’t know how powerful you really are. Of course you’ll need help sometimes, but then again, so do the rest of us, at times. You’re not alone, Josh, you’ve got us. Your readers, and your friends.
    Sincerely,
    Aneesh

    Like

  2. I love this article. I’ve always thought that just because you have a disability doesn’t mean you can’t do anything. You’re still a normal human being, even if you’re not. I always feel really bad when someone gets pushed on or rejected from talking to a particular group or person just because they have a certain disability. You still have the ability to do many things, and even if there are things you really can’t do, you still have enough in you to overcome your obstacles. There are probably a lot of impaired individuals out there who think they can’t do squat. They can, and I know this sounds really clique, but they just have to believe in themselves.

    Like

  3. Pingback: If I Had Come Out Sooner… | J Chen the Columnist

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