What ordering a new walker at 22 taught me about life as an adult with a disability

This First Person column is the experience of Juan Jose Zambrano Camargo, who lives in Hamilton. For more information about CBC's First Person stories, please see the FAQ.

I've been waiting months for this moment. My new walker has arrived, and as my mom rolled it into my room, I feel excited to test it. 

It's the same model as the walker I've used inside my house since I was nine, except it's taller, wider and doesn't threaten to fall apart at any moment. I guess that's to be expected when the new one doesn't have the scars of years of service weighing it down. 

As I grip the handles, it feels odd at first because I don't have to slouch down to use it — this one is sized properly for my 22-year-old body. 

I was born with cerebral palsy, which makes walking difficult without someone or something to help me keep my balance. I've used a walker and wheelchair throughout my whole life, and seen my fair share of upgrades and maintenance to both of them along the way. 

But this time, it feels different. 

With the bigger device, there are things I realize I have to learn again, such as navigating through doorways and turning around. But beyond the physical changes, I also realize the new walker is a symbol of the next chapter in my life — learning to navigate life with disability as an adult.  

This time, the process was different

Growing up, my parents handled most of my accessibility-related needs and they still do for the most part. I've always tested and been consulted to make sure I'm comfortable in any device I might use. But this walker marked the first time I was more involved with the process beyond giving final approval.

The path to getting the walker was a game of back-and-forth with several agencies to figure out if the walker would even be covered. This bigger walker cost close to $450 — not something we could just pull out of our pockets. Ontario's Assistive Devices Program (ADP) funded all the walkers and wheelchairs I've used since my family and I moved to Canada from the U.S. when I was eight. However, this time, ADP only covered the new power chair. For the walker, we had to try our luck with the Ontario Disability Support Program. 

After multiple phone calls and emails over several months to these agencies — some of which I made for the first time in my life — we nearly gave up and were getting ready to pay for the walker ourselves. Thankfully, we were finally able to get the answer we were hoping for: my walker would be covered. 

And, two months after my walker arrived, my new power chair also made it. Another relief.

However, looking back now a few months later, the misadventure of the process has me feeling nervous.

While I waited for both devices to arrive, I realized how essential they are to my independence. My old power chair's battery, after eight years of service, barely lasted a few hours in the end. This made it unreliable and I had to put plans — like long overdue meetings with friends — on hold because any time I turned that chair on might have been the last. I was frustrated that my independence in the outside world depended on a device that was on its last legs.

Looking to my future

I know the independence I value so much is possible because I have such a strong and attentive support system. My parents always make sure I'm keeping up with physiotherapy, can get where I need to go and that my equipment is up to date. I've started taking more responsibilities in these things, but it's comforting to know I can still count on them.

My friends are the other half of my support system. They see my disability and always account for it, while acknowledging my independence and loving me for it. I doubt I'd be able to blossom into the man I am without these people in my life.

One day, my needs as a person with a disability will be my complete responsibility. To be honest, I'm scared to see that day come. I don't feel ready for such responsibility, and I don't know if I ever will.

As uncertain as I am, I know I have the right people in my corner. But I'm also taking stock of how the urban landscape, health policies and so much more will affect my future. A future I hope will let me see my dreams as a writer will be fulfilled and where I — and people like me — can live without the worry that the supports we depend on won't disappear or be too hard to access, because of bureaucracy or where we find work, decide to get married or make any other significant decision in our lives.

As I learn to live as an adult with a disability, I'm realizing I just want to live to the fullest. Sometimes, that seems like too much to ask. But for now, I'm staying hopeful. 

Do you have a compelling personal story that can bring understanding or help others? Here's more info on how to pitch to us.