The podcast where we ask the questions you won’t

Since becoming disabled six years ago, I’ve noticed there are certain parts of the experience that just don’t get talked about. For me, suddenly dealing with incontinence and an inability to do basic things like get up a curb, shame lived in the shadows, in the dark and lonely corners where we leave things left unsaid.

That’s why when I got the opportunity to take the podcast mic, I wanted to talk about these sensitive, touchy subjects. By exploring them, we take away the power they have over us. This is why I produced Pieta Pokes The Elephant (in the room); to start these conversations where we say the quiet part out loud, and share the ways we are navigating the trickiest parts of being disabled in a world that isn’t designed for us. 

The disabled experience is so diverse, and I’ve only got six years experience, so I called my friend Olivia in to help. But as two young women in wheelchairs we couldn’t stop there - we called in three friends each episode to join the discussion. This podcast is a true conversation, with the community weighing in on some of the tricky and touchy aspects of our lives and our disabled experiences. We brought these topics to the light where we can share our experiences with sensitivity and grace, to get to the bottom of some common shared experiences.

Firstly, I wanted to talk about risk. As a woman with a spinal cord injury, I’ve noticed how often people who get seriously injured taking a risk want to get immediately back into the sort of risky extreme sport that landed them in a wheelchair in the first place. One friend shares how, even as a quadriplegic who can’t swim away, he hopes to extend his free diving adventures to include sharks!

On the other hand, I meet people who were too afraid to take their anti-tips off their wheelchair, or who lived at home long after all their siblings had left, seemingly lacking the confidence to fly the nest. Clearly, there was something interesting going on with the relationship disabled people had with taking risks. I wondered if a lifetime in the medical system made people overly cautious with their own health, or if society had somehow convinced disabled people that doing risky activities was not for them.

For our second conversation, we took a few steps back - what made us like this? We switch the spotlight onto our parents, all the good and bad things they did to raise disabled children. For people born disabled, their parents are the first ones to explain their disabilities to them; why they might look different, not be able to do everything their friends can do or why they keep having to go to the physio. At such an influenceable age, the way your parents conceptualise and explain your disability can make all the difference to how you think of yourself, and how your identity as a disabled person is formed.

We hear from friends about what their parents did right, and wrong, including some pretty dodgy advice one set of parents received not to tell their daughter she was disabled - lest it dampen her ambitions! Neither of us have been parents to kids - disabled or otherwise - but we wanted to share our perspective as disabled children on the things parents could be doing to help us grow into adults that are confident in ourselves and our disabilities. 

Lastly, we went deep. Some of the most tender conversations I have in my role as a peer supporter for people with spinal cord injuries are the ones where people confess to me that they feel like a burden to the people close to them, or even to society at large. I wanted to know if this was a common experience in people with disabilities, where this idea was coming from, and how we can free ourselves from the self-deprecating idea that our disabilities make us a burden to the people that love us. This is exactly the kind of conversation I created this podcast to have - where we take our deepest insecurities and talk about them, together, so we can all move forward feeling a little less alone.

Our friends who bravely shared their thoughts, told us how they have grown past feeling like a burden, and how surrounding themselves with people who love them for who they are reminds them of their worth. 

This podcast has been a team effort and a community collaboration. It’s been a pleasure to coordinate the thoughts of our many guests, and facilitate three conversations that I think have been missing from popular discourse. The episodes will be dropping this week, and we would love to hear your thoughts on the conversations we had. Flick kiaora@thedlist.co.nz an email to share what you think, and let’s keep the kōrero going! It’s time we talk about the elephant in the room - and we might just find it’s not as big and scary as we think it is. 

Watch or listen to the first episode here. 

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