Why I used to hate Cerebral Palsy Awareness Day — and why I now celebrate it

 Living with a disability can sometimes be frustrating, expensive and isolating. But, as the CBC's Alisha Dicks knows, it's so much more than that. Her disability has taught her to think creatively and look at things from a different perspective. In her series, Access with Alisha, she gives us a look into her life, and others living with a disability, and helps break down barriers for others.

March 25 is National Cerebral Palsy Awareness Day, when we recognize people with cerebral palsy.

Our colour is green, and you'll see people lighting buildings with green lights, and wearing green.

Most people likely don't know what cerebral palsy is. When they do, you often hear phrases like "my daughter's friend has it" or "my nephew has it" or "a coworker has it."

But what does it really mean? What does it entail?

There are four different types of cerebral palsy, and the terminology has changed over the years. Now it goes by a degree rather than a name.

I have the most common type: spastic quadriplegia. Seventy-seven per cent of people who have cerebral palsy have spastic quadriplegia.

It was caused by a lack of oxygen to my brain at birth and it affects all four of my limbs. "Spastic" means that my muscles are like rubber bands. I have difficulty getting my muscles to move. I have difficulty with fine motor skills and gross motor skills.

Let me break that down a little bit: fine motor skills are delicate, like writing, doing up buttons, putting things into containers. Gross motor skills are the bigger things, like holding a spoon or pouring a glass of milk.

I have use of one hand, which means my right hand doesn't really do much to help me.

Physical and mental barriers

Now that I have explained a little bit about my condition, let me explain why we celebrate this day, and what it means to me.

Many people with cerebral palsy have to go through a lot of medical treatments and surgeries, as well as learning to navigate life in a body that doesn't want to co-operate.

We all have personal goals we try to meet despite the physical obstacles, and many of us would argue the attitude of others is the most difficult barrier, and the hardest to navigate.

I am one person with cerebral palsy so understand that my perspective is one of many, one that has changed over the years.

At one point I didn't want to celebrate the day. I didn't want to be associated with what I thought was a horrible condition/disease, for a couple of reasons: one is that I've had to fight for everything that I've had, to prove to people that even though I had brain damage at birth it doesn't mean that I am less intelligent or less important than anyone else.

The other is that for a long time, I was angry that most of my childhood was spent doing rehab and going through surgeries to reconstruct my hip and loosen my muscles.

Surgery would often leave me bedridden for months on end and in a cast from my boobs to my feet. After that, I had to learn how to sit up again, learn to get my muscles to behave the way they should, because my muscles would forget what they were supposed to do. I would go from needing to be fed to being able to sit up to feed myself again. These surgeries would often have to be repeated time and time again.

I want you to remember: your beauty is not the same as anybody else's. You are beautiful in your own way.

As time went on, however, I began to realize that my condition/disease — although awful — left me with some unique opportunities, and I began to see myself as a warrior, although I face much discrimination in a world that was not built for me.

I have anxiety, depression and post-traumatic stress disorder. I have to prove myself in every way, usually because people judge my ability based on my disability. I remind myself that my disability and my struggles provide me with unique opportunities. I get to tell young people with disabilities that anything is possible. I get to show people in the education system that even though they have obstacles against they I am proof that they can do it.

Because of my disability I was provided this unique opportunity at CBC. I have gone from being financially unstable to being able able to provide for myself while raising awareness of the need to make the world more accessible and livable for people with disabilities.

You might feel sure you're not going to get anywhere, and the world is against you. I've been in that train of thought and I still fight it every day. But I want you to remember: your beauty is not the same as anybody else's. You are beautiful in your own way. Each and every one of you is a butterfly in disguise.

You are a butterfly

Butterflies start out as caterpillars — things that people maybe don't see as beautiful, but it grows into adulthood and transforms into a beautiful butterfly. As you get older you will learn your purpose.

You will learn how to navigate the obstacles that are placed in front of you sometimes intentionally sometimes not intentionally. But you will find your way. All of us are beautiful butterflies eventually; it's just a process, so enjoy this day and recognize your beauty.

I have a butterfly tattooed on me as a reminder that I am beautiful butterfly; I'm just going through the motions of growth and navigation to get where I'm going.

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