Cerebral palsy stopped me from speaking up for myself — now I won't be silenced

This First Person article is the experience of Alex Lytwyn, who lives with cerebral palsy and is a disability advocate, writer and small business owner of Willpower Media. For more information about CBC's First Person stories, please see this FAQ.

Has there ever been a time when you wanted to raise an issue but were not sure how? 

Was there something 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.

Growing up, cerebral palsy stopped me from having the will — and more importantly, the want — to embrace myself. I was just going to float through life like a cloud.

During my school years, I began to feel comfortable in my life's 'bubble.' From the beginning of the day to day's end, I conformed to the 'disabled thought process' by just going through the motions.

Nothing much was expected of me — just going along with life and not asking questions was all that I was really concerned with.

I was going to have to sit up tall and be my own advocate.- Alex Lytwyn

Having a disability used to be so frustrating — the way it made me look, the way it made me sound, the way it made me feel. Every time I wanted to speak, it was like having to go through a 1,000-foot cement wall just to get my thoughts out into the world.

You can imagine then that if this is how I felt just talking about everyday things, I sure as heck was not going to speak up about bigger issues.  

So it was my hope that if I had a problem, it would somehow fix itself — or, because I had a disability, people would just fix the issue for me. 

This does not happen.

Starting to live on my own was a different story.

Home care staff would not help with the most basic of tasks, like changing a burned-out light bulb or killing a fly. If I was going to survive my two years at college, I was going to have to sit up tall and be my own advocate.

It took all my courage, but I was able to speak to the bosses who oversaw the home care staff. We had an open, back-and-forth conversation, and eventually the situation improved.

What a great feeling it was to tell the higher-ups that I was not going to be pushed around and I was going to be heard. 

After seeing what advocating for myself could do, this newly found positive energy permeated through my entire being. I found myself feeling happier, having more energy and wanting to push my life limits even more. 

Yes, every day still presents new in-depth challenges that require a lot of focus and energy, but now, this doesn't deter me from facing these battles head-on — for myself and even others. 

For the past 20 years, I've been fighting for accessibility and an overall improvement to disability rights and standards.

Is it easy? Heck no. 

Am I always understood, listened too or heard the first time? Not a chance. 

Have I been down a lot of different roads and still not gotten any answers or any improvement? One hundred per cent.  

Is all this physically and mentally exhausting? Yes. 

But just having a small spark of hope can help propel a cause over the finish line.

Can't talk well? Can't speak at all? Extremely shy? Type your message out. Send an email, write a letter or make a phone call. Communicate the best way you can.  

Ability is secondary — as long as you have the passion.- Alex Lytwyn

Here's some more advice for advocating:

Start slow and small. Do not get too overwhelmed. If it's starting to feel like a bit too much, pull back. Know that reaching your goal will most likely not happen overnight. 

Be brave. Get 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.

Today, my life is still not where I want it to be, but my determination and drive for better helps me move forward. And I continue to learn how to advocate in the most meaningful and inspiring fashion. 

I have come a long way, but have even further to go to achieve my goals.