The kaupapa of disability pride, to me, is about living in this empowered way, where we as disabled people are free to be our whole selves
By Áine Kelly-Costello
"Just to let you know, I'm blind," I say nervously down the messenger call. "I've travelled a lot before though, and flatted happily. I'm fine to contribute to cleaning and everything."
"Okay, that's fine. If you think you'll be fine coming over here [to Sweden], and you have the skills to do that, it's not for me to judge."
We finished the conversation. I resisted the urge to scream with happiness/relief at that moment as I happened to be in public. At long, long last, I had somewhere to live in Sweden, where I'm moving to study a Masters.
Blindness added its own challenging dimensions to the already fraught pre-uni-semester accommodation hunt. After I mentioned the fact to many prospective lease-holders/house-mates, they simply stopped the conversation. Some sounded tentatively okay, and then rented the room to someone else, on what grounds I can only speculate. Then there was the matter of finding somewhere with footpaths covering at least the majority of the routes to the transport stops I'd need — info which isn't sitting there on the apartment or room listings for you.
In a world where many shop and airport staff still talk over your head as if you couldn't possibly communicate for yourself, where when you move countries you find that being disabled adds a whole new level of bureaucracy to the picture, where when seeking the necessity of a house you feel obliged to prove yourself double because you happen to be disabled, it seems disability is not your friend. It appears to suck away your time, energy and any inclination to talk about it at all when not obliged to do so by some system or other.
Of course, in reality, other people's incorrect assumptions and judgements, and systems not designed for you are the actual aggravating, exhausting factors.
That knowledge alone is important, but it doesn't exactly compensate for the seeming burden's continued existence.
For me, moving countries from a disability perspective in a healthy, authentic, fulfilling way is about much more than intellectually understanding I'm not the problem. It's about having disabled friends who won't judge me, who I can moan to, about whatever hopefully but especially how disability's impacting my life at the moment. They get it; they've been there, or they've been somewhere similar. It's about having Facebook groups and email lists where I can ask for practical advice on how to get my screen-reading software to play ball with track changes, or fool-proof methods of making sure you flipped the thing you're frying exactly once, or how to unjam the joints of your cane when it awkwardly refuses to fold up. It's about having allies, disabled and non-disabled, who are committed to helping you navigate an imperfect world, like my Mum who tested out upwards of 80 routes from potential accommodation options to transport stops for me. And so far I've only talked about things that empower me on an individual level.
The kaupapa of disability pride, to me, is about living in this empowered way, where we as disabled people are free to be our whole selves, with no inclination to put disability into the corner due to other people's misguided judgements and attitudes, not systems clearly not designed with us in mind. Disability pride has more potential still when we use it to empower not only us as disabled individuals, but also the disability community.
When we come together to publicly celebrate what we bring to the world, we want this vision of empowerment to be contagious. When we collectively call for an accessible, inclusive country, designed to value everyone, we need allies to champion it with us, because our collective influence is greater and Aotearoa is the better for it. When more disabled people are represented in influential positions as MPs, journalists, lawyers, and teachers, we gain the power to speak up and advocate in ways that convince those previously unpersuaded to change perceptions, practices and laws to benefit the community and generations of disabled people to come. That's what the potential of harnessing disability pride to set the agenda looks like to me.
Seeing as I can't actually be on the ground for Disability Pride Week, being in Sweden and all, get amongst it for me please! Or do what I'm doing and participate remotely, and then carry the kaupapa forward. Read something else on this wonderful site because it'll be from another disabled writer, tell your friends to Like the Disability Pride Facebook page, have a look for disabled candidates who you could back in the local elections.
From Aotearoa (or Sweden), we might be powerless to derail Trump's grip over America or to stop the Brexit train, but we can find five minutes to educate ourselves here, a chance to speak up there. As Kiwis, we're reluctant to talk about it, but chipping away to reshape our corner of the world for the better is something to be proud of.
Image description - Áine standing by a tree in front of a Swedish lake.