When I was born, the doctors said I would never walk, talk, or even smile. It is only thanks to the hard work and tautoko of so many individuals: my friends, whānau, doctors, physiotherapists, and I like to think myself, that I can be here today.
It all started back before I was even born. The doctors said that I had effectively had a stroke while still developing, leading to severe underdevelopment of the left side when I was born. This meant I spent many of my early years in therapy, surgery and other support programmes to ensure that as I went through my early years the developmental deficit could be as small as possible.
Thanks to hard work and many different types of therapy the initial classification of congenital hemiplegia (affecting my whole left side) has been downgraded to congenital monoplegia, meaning only my left arm is noticeably underdeveloped, it being a lot shorter and weaker than my right arm.
Another part of my disability is distal arthrogryposis: my left hand has joint deformities and tightness in the skin that limits the motor skills and even how far I can open my left hand. I have had multiple surgeries on it which have improved it to an extent.
In all honestly the concept of ‘disability pride’ is somewhat of a new idea personally. When I was at primary and intermediate school I was very hidden about my disability; I did not want any of my classmates to know. Not all disabled people would be able to do this, but since my disability is confined largely to just an arm I could (until I got onto the sports field) pass relatively well for able-bodied.
I recognised that being disabled meant that I was different from my peers, and young pre-teen Archie saw that as something to be ashamed of instead of an unavoidable fact of life that needed to be recognised and built upon. During P.E. when I was inevitably bad at the games I simply explained it, both externally and somewhat internally, as “I’m not good at sports”. The fact I achieved well inside the classroom did not help with this narrative, as I could simply go off the binary trope of either being good in the classroom or on the field.
I wish I did have a concept of disability pride then, for my then-mentality meant that if there was an activity which my disability hindered, the default response was to not participate rather than work around the disability to participate. For example, I never really played any sports while at primary or intermediate, only really getting involved in the latter years of secondary school to quite a minor extent.
Disability pride, especially for children, cannot be a solely internal phenomenon. It must be supported and fostered by peers and others which disabled people interact with. I do not think that shy pre-teen Archie would have been able to be any more proud of his disability without more being done within school and other environments to make him feel more proud.
While my schools were supportive and at the time I probably would not have faulted them, looking back I feel there is more they could have done to enable that pride. For example, all the way into my junior P.E. classes at secondary school there was no boundary adjustment for the grades. If I wanted to get an ‘A’ in a certain skill, such as athletics, swimming, or tennis I had to achieve what the school deemed to be an ‘A’ for a non-disabled person. This led to a discrepancy between the two grades, I remember every report card I would get an ‘A’ as the effort grade, but then a ‘B’ or even sometimes a ‘C’ for the skills. This meant I was less likely to engage in not only P.E. classes and sport, but also that I was more likely to view my disability in a negative light. It was not just a part of my identity but a negative element that got me worse grades and meant I could not engage with my peers on the sports field.
Organisations such as the Halberg Disability Sport Foundation do an incredible job in facilitating this disability pride, and I am indeed proud to be on the inaugural Halberg Youth Council supporting the Foundation’s mission to enable all physically disabled young people to participate in sport and recreational activity.
I first interacted with the Foundation when I was in Year 10 at secondary school. I wrote a piece for my English class not too dissimilar to this one. My English teacher encouraged me to talk to the Halberg Foundation about how they could support me and they ended up helping modify a bike for my disability so I could participate in road cycling with my school and family (my sisters are national champion cyclists!).
In some respects, it has been my place on the Halberg Youth Council, where I have been able to interact with a much larger group of disabled individuals from young children to current and former Paralympians, which made me think more deeply about disability pride. It was really the first time I have openly talked about disability and how it affects life with fellow disabled people. This was a watershed moment in how I thought about the concept of my disability and disability pride. These last couple years have been very significant for me developing the broader idea of pride. Concurrently to this fostering of disability pride I have been coming to terms with my own sexuality first internally and then in public. 2017 is really the first year I have had true public pride in both aspects of my identity.
Sometimes, especially for young people, it can be harder to have pride in your identity than it would be in an ideal world. I think a crucial part of coming-of-age is coming to terms with your own identity, especially if parts of it are not included in society's 'typical' identity. What can we do to support disabled and other individuals to develop this pride? I think that visibility and support mechanisms are fundamental to normalise these differences and reduce the fear of ostracisation.
I am personally proud to see the Human Rights Commission run this Disability Pride Week coinciding with the United Nations' International Day of Persons with Disabilities on Sunday. This broader outreach helps normalise and legitimise disability and disability pride within society.
Regarding more specific actions that can be taken, I would encourage schools, sports clubs, businesses and community organisations not to ignore the disabled community. Inclusive sports, other activities, and spaces help ensure equality in access and help prevent people with a disability viewing themselves and their disability as somewhat inferior.
There also needs to be an attitude shift amongst wider society. The story earlier in the year when disabled National candidate Katrina Bungard was widely criticised for parking in a disabled space (which she is eligible to do) highlights the problem.
We as a society need to shift our perception of a disability away from the stereotype of a visible disability such as paraplegia to a recognition that not all disabilities are immediately visible (such as mine). This would not only reduce unnecessary attacks, such as those on Bungard but facilitate personal recognition and pride in a disability; something that I struggled with personally.
Our Disability Rights Commissioner, Paula Tesoriero, agrees with Bungard's view on the incident that the public backlash was caused by a view that "successful people would never have a disability.“ Societal change starts with individuals making a change. This Disability Pride Week, let us be proud of our disabilities and vocal in that pride. Non-disabled people, try listening to the voices of some new disabled advocates.
It feels almost surreal that I am able to write this piece today after looking back on the struggles of the last seventeen years. I have come a long way in not only how I view my disability but also how I interact and work with it. To everyone who has supported me: my whānau; friends, teachers; health sector workers; and others many thanks - kia ora rawa atu. I cannot express how grateful I am for your tautoko over the years.
Happy Disability Pride Week!