My Parents Kept my Diagnosis From Me for a Decade: My Journey with Cerebral Palsy
Updated: Dec 4, 2020
By Lauren Wang
Christina Tao via Voices of Gen-Z
Have you ever felt like something was wrong with you, but you didn’t know why? Then all of a sudden, information gets thrown at you, and everything starts to make sense?
That’s what happened to me. I was born with a mild case of Cerebral Palsy, a type of physical disability that occurs after a trauma has happened to the brain. My case affects my balance and my speech. This means that It is hard for me to balance, and when I was little, I had to take speech therapy. My case is thankfully mild enough to carry on with my day without it becoming too much of a problem. But here’s the thing with my story: my parents kept my diagnosis from me until I was 10 years old.
At a young age, I always suspected that something was off. I knew that I was different from my peers at school and at the playground. In elementary school, I was teased a lot by my friends and classmates for not being “normal”.
Being “normal” was all I wanted to be in elementary school, but I wasn’t. I couldn’t do the monkey bars, couldn’t do flips on the bar, couldn’t walk on the balance beam, and couldn’t catch a ball. When my friends would question me or look at me funny, I didn’t have an explanation on why I couldn’t do it. I even tried doing the monkey bars to claim how normal I was, and a hospital bill later, I ended up with a broken arm. The next year I didn’t learn my lesson, and I attempt the monkey bars again, history repeats itself, and I end up in a cast for three weeks.
At age ten, my parents finally broke the news, and you can imagine how hard it was to process all this new information. All of a sudden, everything started making sense. The key to a locked door finally opened with answers and new information about my identity. Everything started making sense, like why I had to take speech therapy in school, why I was the only person in my class that was allowed to play with fidget toys, and why I was the only person to take physical therapy. There was this new piece of me that I had to learn about and understand why I am the way I am.
As I went along life, grew older, and gained more knowledge, I started recognizing that I was getting gaslighted. Gaslighting is a type of physiological manipulation in which a person or a group drills ideas and questions the victim’s sanity making them doubt their beliefs. Not only was I getting gaslighted, but it was by my own parents. Whenever I wanted to talk about my experience being disabled in an able-bodied world, they would always shut me down. Some of the things that they would say to me included:
“You barely have a disability.”
“You’re lucky you are not in a wheelchair.”
“Other people have it worse than you.”
“Stop using it as an excuse.”
I couldn’t talk about my experiences with them because every time I did, the same old phrases were being shoved down my throat. I didn’t feel validated, and I didn’t feel heard. The gaslighting led to me not believing my own struggles and brushing them off. I started corrupting my mind with these thoughts and started feeling invaluable. I started to underestimate my skills and bash myself. I was always so down on myself. I never wanted to fail at things and disappoint myself. I thought if I told myself I’m not good, I suck, I’m not going to make it, I wasn’t going to be disappointed when things didn’t turn out perfectly. I never wanted to hype myself just to fail at something because my disability set me back a few steps. I was protecting myself from disappointing my friends, teachers, and my parents.
Coping with the Internalized Ableism
The gaslighting, combined with unanswered questions for a decade, created this internalized ableism for me. For the first decade of my existence, I thought I was an able-bodied person with the cards against me. It wasn’t until this year that I recognized the internalized ableism, which was the first step towards my coping journey. Over the past few months, I have shared little by little of my stories on Instagram and have confronted my parents about the gaslighting and harm they have inflicted on me for the past 13/14 years. I have received a lot of support through my stories and messages, and it’s made me realize that my thoughts were valid and it’s okay to have a disability.
I have learned that my Cerebral Palsy doesn’t define me; I define it. My disability is only a small part of me. For the first time in 18 years, I am proud of who I am. I’m finally strong enough to embrace that side of me. My disability has made me stronger since I’ve embraced it because I work two times harder to get tasks done. If I can accomplish 18 years with my disability, I can face anything the world throws at me.
Disabilities Fall on a Spectrum
What do you think of when you think of a disabled person? If I were to guess, you were probably thinking of a person in a wheelchair or someone who is not mentally capable of being on their own. This is a misconception because disabilities fall on a spectrum. If two people have Cerebral Palsy, one person could be in a wheelchair and have speech impediment issues, and the other person could look able-bodied and “normal.” No matter where you fall on the spectrum, it is important to note every disability is different and will affect people differently.
My parents failed to recognize that my case of Cerebral Palsy was only one out of millions of cases worldwide. Some people have it better than me, and others have a more severe case than me. Most disabled people will tell you they are lucky they don’t have it worse because it is such a broad spectrum. Just because I’m not in a wheelchair and don’t have severe mobility issues doesn’t mean I don’t have daily struggles. My struggles are still there and are still prominent today. My balance isn’t the best, I struggle with hand-eye coordination, and I haven’t aced my fine motor skills. I’ve had these struggles from day one. I will always have these struggles and setbacks, but they don’t hold my life back.
It is essential to recognize and normalize the disabled spectrum because every story and every experience is unique. Whether the person looks able-bodied, like me, or not, we must make them feel validated. Disabilities shouldn’t be stigmatized. They must be normalized because that is the first step towards progression and acceptance of the disabled community in society.
Written by writer Lauren Wang