Consumer stories: Andrea

Transcript

Lifelong health experience, being born with mild ataxic cerebral palsy, however, receiving late diagnosis at the age of 10 and missing the early intervention window. That resulted in multiple surgeries as a teenager trying to put myself through high school.

From a young age, I have been very vulnerable in being reliant on the healthcare system, which I am very grateful for, and it has taught me a lot of lessons. So I used to often have doctors and specialists say how well I was managing everything, but sometimes the words that I would hear, for example, when I’d be getting wheeled into theater, “Oh, this is the most complex case we’ve ever dealt with. We’ve never seen anything this bad in our whole lives,” is actually brutal. Because when you’re so vulnerable and relying on these people making you feel better, hearing those words is not reassuring.

Even in healthcare when people go, “Oh, we didn’t even realize you had a disability,” because of my level of hard work that I’ve put in to try to make myself stronger and fitter, just doesn’t set the tone for feeling valued and respected as me, as the package that I am, and it can sometimes diminish the journey.

It’s okay to acknowledge people’s resilience and bravery, but also you’ve got to reassure them and not make them feel that they’re this out of the box case, which I have been made to feel my whole life, really. So you can have a mild physical disability and still be articulate, work full time, put yourself through university, drive. But it doesn’t mean that it’s not less challenging than other people’s health journeys and disabilities.

So understanding and a bit more education and awareness of disabilities impact people differently, but the impact for them is still very real, and acknowledging that and not diminishing it. I’m very fortunate that I’ve been able to advocate for myself, but a lot of people aren’t in that position where they can articulate their needs.