There’s always a way

Has there been time when you wanted to raise an issue but were not sure how to? Was there a certain situation that you wanted to advocate for, but the thought of not being taken seriously or heard, overwhelmed you?  I have been there and done that.

During my school years, is where I began to feel comfortable in my ‘life’s bubble.’  From beginning of the day to days end, I conformed to the disabled thought process, by just going through the motions.  During these years, nothing much was expected of me. Just going along with life, and not asking questions along being happy, was all that I was really concerned with.

Knowing lots about sports was my calling card.  People were always impressed with my knowledge and in my mind, this was going to lead to bigger things.  Life at this point, was simple and overall, things were good.  I mean sure my disability problems but overall life was decent.

All day every day, I had the help I needed.  In school I had a helper, coming home after school my family supports were great.

Growing up, I was around other disabled individuals.  They tended to be happy with where their lives were at. (Including myself.) This way of thinking seemed to envelop my being. Cerebral Palsy stopped me from not having the will and more importantly the want to embrace myself.

In my head for the rest of my life, I was just going to float through life like a cloud.  When things get a bit bumpy, my frustrations would build up, then somehow, someway, the cloud would open up, and the frustrations would come pouring out and I would continue to wander, through life with ease.

Cerebral Palsy used to terrify me.  The way it made me look; the way it made me sound, to the way it made me feel.  Every time I wanted to speak; it was like having to go through a 1000-foot cement wall, to get my thoughts out into the world. If I felt like this, talking in everyday conversation, I sure as heck was not going to speak up on other issues.  

It was my hope that if I had a problem, it would somehow fix itself because I had a disability, people would just fix the issue. Short answer is WRONG.

Once turning 18 years of age, life was a lot different.  Up until this point, if I needed help, people were there to assist.  Family, friends and teachers’ assistants. Someone was always around to help me complete a task.

Living on my own is a different story.  It quickly became very obvious that if I was going to survive, I was going to have to adapt and start using my voice. If not, life would have left me behind.

Moving away from home, this was the first time that I was dependent on total strangers. With me being very shy and scared, sometimes staff would try to take advantage of me. Home care staff would not help with the most basic of tasks, like changing a burnt-out light bulb or killing a fly.  

It took all my courage but I was able to speak to the bosses. We had an open, back and forth conversation and eventually the situation improved. What a great feeling it was, to tell the higher up’s that I was not going to be pushed around and that I was going to be heard.

After seeing what advocating for myself could do, this new found positive energy permeated through my entire being.  I found myself feeling happier, having more energy and want to push my life limits even more. This new found confidence, snowballed into helping me shape the person that I am today.  

For the past 20 years, I’ve been fighting for accessibility, more home care and overall disability rights. Is it easy? Heck no.  Am I understood or listened to or heard the first time? Not a chance. Have I been down a lot of different roads and still not have any answers or any improvement, 100%.  Is all this physically and mentally exhausting? Yes.

You may be asking yourself, “why do you do all of this, if it is so difficult and you’re not sure what the end result is going to be?”

To me, no matter what is holding us back in life, everyone has the ability to influence society in a positive manner.  Can’t talk well? -Type, can’t speak at all?  Extremely shy? Send an email/write a letter or make a phone call. Communicate best way you can.  Those around you, will help your message flow through society.

New age technology is not needed to advocate successfully. Just having spark of hope, can help propel a cause over the finish line.

Start slow and small. Do not get to overwhelmed.  If it’s starting to feel like a bit too much, pull back.  Know that reaching your end goal, will most likely not happen overnight. Be brave, go out of your comfort zone. Disabled or not, if you want to be the voice of your cause, ability is secondary.  As long as you have the passion, the ability we soon follow.

Today, I would like to have 24-hour care a steady job. Has this taken place yet? No.  

As I continue to peruse my dreams, with my confidence and belief in a better world, I hope that one day, they will become a reality. This determination and drive for better, helps keep my inner strength involving into an improved individual, with a greater sense of purpose.

During this ongoing journey, I continue to try and to find myself. At the same time, continue to learn how to advocate, in the most meaningful and inspiring ways.  I have come a long way, but even have further to go to achieve my goals.

Everyday presents me with new in-depth challenges, that require a lot of focus and energy. This will not deter me, from facing battles head-on for myself and others.