National Cerebral Palsy Awareness Day: Here’s to my fellow warriors!

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Today’s post is in honor of National Cerebral Palsy Awareness Day. CP is a generalized, umbrella term that is used to describe “the way it affects people’s movement, the part of the body affected and by how severe the effects are.” (Cerebral Palsy Alliance, 2018). https://cerebralpalsy.org.au/our-research/about-cerebral-palsy/what-is-cerebral-palsy/types-of-cerebral-palsy/

Did you know that there are three categories of Cerebral Palsy, that uniquely impact the individual?

  1. Quadriplegia– Each of your arms and legs is affected. An easy way to remember this is “Quad” means four.

  2. Diplegia- Each leg is affected.

  3. Hemiplegia- One side of the body is affected. (For example, one’s left arm and left leg.)

I was diagnosed with Spastic Diplegia Cerebral Palsy. Quite a mouth full, right? Let me break that down. Spastic refers to the portion of the brain that controls movement, and as highlighted by the definitions above, Diplegia indicates that each of my legs is impacted. Something that I’ve always found incredible is that individuals that share the diagnosis can still present so differently from one to the next. Each person making up a unique pattern of a quilt that holds us all together.

In the spirit of awareness, here are a few of the realities I wish people understood.

  • The condition is not contagious.
  • Representation is everything!
  • Ableism is difficult to deal with.

I am not going to sit here and tell you that I had a bad childhood, in fact, it was quite positive. However, like many individuals (able-bodied and special needs alike) I was certainly the target of isolation, cruel words, and at times, mean nicknames. I remember on more than one occasion welcoming a new student to class, for them to look at me and say “stay away, I don’t want to catch what you have!” it seems minimal now as an adult but as a child, it was particularly hurtful. My condition is a result of a brain injury, not a germ. I assure you, you are not going to catch it by being around me!

I am thankful that society is evolving and beginning to challenge itself. With social media now being such an integral part of everyday life, we now have the ability to showcase, include, and challenge what is a “norm”. Model Jillian Mercado, bodybuilder and model Nick Santonastasso, and designer Christina Mallon, have all been among the trailblazers that are smashing barriers which recognizes the beauty in differences. The Paralympics was such a source of inspiration for me. Not only did it showcase incredible athletes, and individuals in their own right, but it was one of the first times I realized I was capable of greatness because I looked up to them!

Ableism, which is generally defined as discrimination in favor of able-bodied persons, is one of the biggest challenges in our everyday lives. An example of this was the concerns that I had prior to a family vacation, which took place on a cruise. I had to consider whether or not I was going to bring my wheelchair. Did I want to take the chance of the airlines misplacing it? Would the cabin on the ship be able to have a space large enough for me to store it overnight? Would I even be able to safely and comfortably maneuver my wheelchair throughout the hallways of the ship? These should not have to be factors that I needed to take into account, because ultimately, my disability is not the burden, rather inaccessibility.

Today I challenge you to look beyond your own perspective and lense. I encourage you to do everything you can to be an ally. If like me, you are a person with disability, I hope that you take a moment to reflect and celebrate everything that you have accomplished. We are in this together, so let’s continue to change the world!

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