Examples cited in the study include disabled people having to put up with well-meaning types who insist on praying for us (something I have endured countless times, groan!) or determinedly insisting on providing physical support – such as a young blind man being led inexpertly down the street when he was an independent cane user (yep, been there got the T-shirt, too).
Something that I've managed to evade is the judgement of non-disabled members of the public who are openly affronted that someone using a mobility carpark, with a mobility permit, does not look to them to be sufficiently disabled. Luckily or not, my disability is clearly evident; I know 'because of all those daily double takes and stares.
Those who can appear to walk from the car to the supermarket without evident spasming or shuffling are subject to frequent accusations of not being disabled by the ever-vigilant public. Often these people can walk from A to B okay but no further, due to disability conditions that are actually nobody else's business.
The research project, dryly named Enabling Participation of Disabled Young People, is a Massey University project by Penelope Carroll, Karen Witten, Octavia Calder-Dawe and Toby Morris, funded by the Health Research Council of New Zealand.
The three-year study explored the everyday lives of young disabled people with mobility, vision and hearing impairments and examined the factors that enabled or constrained their opportunities to fully participate in community life. They worked with 35 disabled people aged between 15 and 25.
The study highlights how ''meaningful community participation'' is critical to an individual's overall wellbeing. Being a real part of the community can impact hugely on the quality of a disabled person's future. Furthermore, a lack of community participation profoundly affected individuals in a negative way.
The young people in this study identified a range of factors that affected their participation in community life.
As Karen Witten, Professor of Public Health, SHORE and Whariki Research Centre, Massey University, told me earlier this week: ''Awareness about universal design has meant the built environment is more accessible now but the ableist attitudes many young people encountered were still a major impediment to their community participation.''
Elements of the built environment and public transport systems worked well for non-disabled people but excluded or inconvenienced others, limiting their mobility and access to information, people and places. But, as Prof Witten stated, by far and away it was the ableist bent of society that provided the biggest barriers.
So what's new? Ableism, or attitudinal barriers towards disabled people in New Zealand and around the world, have been as prevalent as a bad smell. Reading through this research, I was reminded of how, even if physical barriers are being eliminated, the social change required to support it moves at a very slow pace, with the word glacial springing to mind, (although climate change is speeding that up).
It is everyone's responsibility to keep up, encouraging one another to be open minded and creative about the ways we can all be full participants in society.
Growing up with a disability, I am realising how lucky I was to be surrounded by such open minded and inclusive people. From my family growing up, school mates and university friends, I enjoyed robust social networks that stood me in good stead for future endeavours.
However when one steps out of one's usual familiar social circles, it's a reminder that ableism is still alive and kicking. You find yourself going back into that old verbal tap dance routine, designed to convince new people that you are one of them.
For me, I hastily assure unfamiliar people that I am on their level by using a combination of humour, relevant and topical banter and speedily seeking out a common denominator from which to create a bond.
Perhaps if we can all take that approach – find commonality, use humour, acknowledge the mana of each other, intrinsic to the individual regardless of disability, gender or race – to creatively be mindful of being inclusive, our world would be a better place, for our youth and for us.
Jonny Wilkinson is the CEO of Tiaho Trust - Disability A Matter of Perception, a Whangārei based disability advocacy organisation.
