I saw Charlotte’s post on LinkedIn about universal design, a topic that I have recently been pondering. Universal design is a concept that we should create products and services that work well for all, no matter your ability, gender, race, background. I wasn’t sure how Charlotte and I got connected in the first place, but I snooped around, and found what a cool person she is! It is inspiring to see young people be passionate about impactful work and executing on it too. Charlotte is an equestrian para-athlete and an alumna of the University of Auckland. She has created several fantastic innovative initiatives, and it is my pleasure to have her on Storyo!
I’ve always loved horses. I don’t remember a time when I wasn’t obsessed with them. As part of a “what do you want to be when you grow up” writing exercise at school, I wrote “I want to be a professional horse rider. I want to go to the Olympics and represent New Zealand in the saddle.” I was six years old when I wrote that. I may have consciously forgotten writing that until we unearthed it a few years ago. But something held and I chased it when the right opportunities arose.
In hindsight, it’s that training and breaking those walls early that made me the athlete I am now. It was because my coach saw potential in me and he wanted to get me to the 2010 London Games to swim. I was only eleven at that time, but he believed in me even then. It didn’t end up happening because I left the country and stopped my training at that time. I came back ten years later to the same place and said help me get ready for 2016 games instead, and that’s what we did.
I think, above all else, having a strong network of support with your best interests at heart is key. My parents never pushed me to aspire to Olympic level. That was all me. They only really wanted me to learn all the good traits that sports can give a person and of course, it was good for my health and rehab after operations.
There’s a huge amount of financial sacrifice, especially with horses. But it’s the sacrifice of time, things and people too. I didn’t see my family for about four years because I needed to train and competition season is September through to March, so it made seeing them on the usual holidays difficult, especially as they live overseas.
That kind of commitment is testing on relationships too. I’m fortunate that my friends were so supportive, I didn’t have a lot of free time, but they appreciated the effort I’d make to try and be there for things when I could. Even if I’d fall asleep on the floor, they’d cover me with a blanket and put a pillow under me and continue as usual. It’s essential to keep the people you love involved and stay connected. After all, there’s no point in a medal if there’s no one to share it with.
I had to calculate it once for university purposes, and I think it got rounded up to over 32 hours a week, which excluded any time I put towards my studies.
I was riding six days a week. While the time in the saddle would usually only be 45-60 minutes, the time that it takes to care for your equine partner: getting Amarante in from the paddock, grooming, tacking up, tack off, bath, rugs on, doing feeds and back to the paddock really adds up. That would easily clock up to three hours on its own. I also had pilates and gym, which was an hour-long session, plus the run to get there and back to the station.
When I went back to swimming, it started as cross-training for competition fitness. As riding competition is spread over three days usually. I started with short 1:1 sessions, which evolved fairly rapidly to training on a swim squad multiple times a week.
Looking back on it, it was on the high level of insane for what a body with my condition should be covering — both in the water and on land.
When we moved to Australia for more qualifying opportunities and to get more experience on the international stage, we had to incorporate training in the heat of the day. It’s never a guarantee that you’ll be lucky enough to have a ride time outside of the peak hours of heat. We had to acclimatise to performing the same way, regardless of weather conditions.
Hail or heatwave. I spent five years riding horses in the desert in Dubai, so it wasn’t too much of a stretch for me, but it was harder for Amarante.
Unleash Space is a realised dream of a group of students that wanted to create a community-building space for the student body of the University of Auckland.
It was the brain-baby developed on an entrepreneurship accelerator programme called Summer Lab. I was in the same programme and became really good friends with the team.
After the programme finished, I kept gatecrashing their meetings until I was absorbed into the project. We partnered with the University’s Centre for Innovation and Entrepreneurship to blend the two concepts together. A community space to teach and grow innovation and entrepreneurship.
During my time with the team, we designed and built all the content that defines the culture of the Unleash Space including how workshops are run and how we inducted people.
Within Unleash Space, we have a maker space decked out with equipment to allow people to prototype and create: 3D printers and scanners, CNC router, laser cutter, sewing machines. As a Creative Technologist, my job was to educate people on how to use the equipment and support them pulling the ideas from their heads and turning it into something physical.
The Unleash Space is intended to be something of a growing ground for student start-ups. We have people making everything from t-shirts and costumes to complex architectural models and LED-lit periodic table displays.
In terms of working for Unleash Space, we have one hard rule: for the students by the students. So once I graduated, I couldn’t work there anymore but the team there is very much my like family, so I visit whenever I’m in the area.
We have two branches of work, either as a creative technologist in the maker space or as part of the development team which creates and manages all the events that we put on for the Unleash community.
I think the core concept came from my own lived experience and selfish needs haha Riaka was developed under Summer Lab, the same accelerator programme that the original Unleash Space concept came out of the University of Auckland’s Centre for Innovation and Entrepreneurship.
It was a chance thing really, on the first day we were given time to develop concepts to present to the other participants. I knew my original idea - some scheduling software - really well and so finished the template with time to spare. I used the spare minutes to draft out the premise for what I called para-fashion. I pitched both and was totally surprised that the software concept was utterly ignored while the para-fashion gathered fair attention. So we took that forward for Summer Lab, and we narrowed down to shoes being the most problematic item for the majority of people across a broad spectrum of conditions.
At a high-level, the concept was fashionable shoes for people with dexterity issues. There are plenty of companies out there that supply this kind of thing, but they were primarily designed with the elderly in mind. In a society that puts so much weight on aesthetics and building first impressions based on looks, the team wanted to create a functional shoe that looked as good as it felt. The current alternative is a poor teen having to wear a shoe that made them feel like they were 77.
For a person that struggles with seemingly basic tasks, being able to put on a pair of shoes themselves can be hugely empowering. It sets them up for the day, whether that’s taking the stage to deliver a kōrero or just going to the supermarket. Universal design principles were core to our ethos too. We were designing with a particular audience in mind, but we didn’t want there to be any barriers between that audience any anyone else using them. We would say, “Designed for the differently-able and made cool for anyone else.”
We got some great mentorship from the team at Bobux, a NZ kids shoe company that punches well above their weight in the industry. But in the end, we didn’t get past the drawn prototype phase. There are a lot of things that played into that but a massive contributor was my mental health. My team was inexperienced, we didn’t fully know what we were doing and none of us were experts. I cracked under pressure. A mentor of mine intervened, and I made the decision that I needed to step away to recover.
Also, at the time, I didn’t feel like I understood the world well enough to be making business decisions that would have knock on effects in so many different spaces.
I made the call that I wanted to go out and experience the different sectors a bit, build some confidence in those spaces and if Riaka is still relevant when I come back, I can look at trying again. I’m still on that journey at the moment but, I honestly believe that was the best decision I could have made at that time.
Depending on how you want to look at it, you could consider it one giant failure. I tend not to. For me, Riaka was a formative experience, and I learned and achieved so much along the way. For example, our “designer” Kevin, was a mechanical engineer, and he still somehow managed to take my verbal descriptions and turn them into accurately drawn concepts. The experience also cultivated my leadership style. But also about the importance of looking out for yourself (which I didn’t do, and still struggle with), no concept is ever so important that it’s worth going beyond burnout. Which feels hypocritical to write given my standard mode of operation, but as humans – we’re always learning and always trying.
I wasn’t going to realise my goal of competing at the 2020 Paralympics without doing considerable damage to my body that was still healing from my last attempt at the games. So it was about reframing a dream so I wouldn’t wholly lose hold of it.
I saw the GlobalHobo post advertising their next internship in Japan I’d always been a good writer in school, and I enjoyed it. I didn’t think I’d get in! But I’m a believer in going through the process of applying for things is good experience building even if you don’t end up getting the position.
Wellington reminds me of Tokyo because of its strong walking culture and reliance on public transport modes. That said, the attitudes towards people with different conditions are also different.
I was largely ignored and just part of the sea of people that commute to Tokyo on a daily basis.
I was so thankful for the anonymity. In NZ, I have had multiple incidents of strangers telling me I’m not disabled so I have no right to sit in the allocated seating on public transport. By that same token, I’ve had people tell me that if I pray my condition will be healed.
Those encounters have a lasting traumatic effect, and I imagine those people have forgotten those conversations. All I ever want is to get from A to B without major interference. Japan gave me that. Sure, it was a lot harder during rush hour on the mainline or at the end of the day when my engine was running low, it tested my physical endurance a lot, but I survived and largely came to enjoy it.
But I am a particular case. Tokyo has a ways to go in terms of its accessibility. I’m an ambulant, which means while my relationship with gravity is sketchy, I am capable of walking considerable distances (largely because of a high pain tolerance and even higher stubbornness and mental endurance) and I can manage stairs though I won’t be fast. That meant I could use all the train stations. That’s not the case for all stations. Most wheelchair users are limited to the use of specific station because they don’t have wholly accessible entries / exits. The flip side is that wheelchair users are well supported once they’re in the station.
Transport staff will escort the person to their platform, ensure they safely aboard, and will then radio the destination station so that staff can ensure that the passenger can disembark and leave the station safely.
It is a matter of making staff aware of your needs. They will always be willing to help. I didn’t make use of it because I was traveling with people and half the fun was using myself as a crash-test dummy with my friends with different needs in mind. Identifying problems and solutions for them.
One thing that there is an abundance of is tactile paving, sometimes called braille blocks. It’s all over Tokyo! I had a love-hate relationship with that. On the one hand, it’s incredibly helpful for those who need this kind of provision. However, within my own needs braille blocks are massive slip hazards and painful to walk on. But that’s beside the point.
Because the walking culture is so strong, most senior members of Japanese society are incredibly fit, that’s not to say they don’t have their own struggles, but they are much more adept to the rhythms of Tokyo than a foreigner of the same age I think.
Accessibility isn’t legally standardised in Japan. So the condition of an “accessible” room in Japan will differ from hotel to hotel. It’s also true of the train stations in Tokyo. On multiple occasions, we’d clamper down tunnels of stairs, and find ramps in seemingly bizarre spaces that made no sense.
Also with the way Tokyo is structurally built, getting wheelchairs and prams into a local eatery, for example, would be difficult as there are often steps up or down into the place and interior is often compact. For this reason, it’s more common to see mothers carrying their kids in harnesses. One thing I learned on my travels was that Japanese elevators don’t have motion sensors so you need to jam the open button to keep it open, otherwise it will mercilessly clip you. That’s why Japanese elevator etiquette is a thing.
There is a good online resource called Accessible Japan run by Josh Grisdale. I had the opportunity to attend a lecture he gave on accessibility in Japan and the potential opportunities and barriers around access friendly tourism. This included trials and tribulations of the upcoming games. Like a fleet of taxis that were designed to cater for wheelchair users, except the dimensions were off and couldn’t actually fit a motorised wheelchair which has greater height and weight dimensions than a manual one. However, I remain confidently optimistic that Japan will be ready for next year’s summer games. I hope that the answer will be a universal approach as opposed to just applying treatment to the areas that fall within the zones of the Games. Because there will undoubtedly be supporters with different needs coming in for the Games and they are unlikely to all fit within the zone so that the solutions need to be scalable.
Sure, plenty of times. I think it’s something of a naturally occurring cycle. I encountered it during my degree, after the qualifying period for the Paralympics, when my graduation was looming in my face. What comes after I finish this graduate programme? But experience with this has taught me three important things.
First, I have a specific approach to this situation. I call it a “bar no holds”’ perspective.
In this, if I could do whatever I wanted, money and commitments are no object, what would my goals look like? What would I want to do? I write down all those things down. Those things written down are my ultimate ideal goals, and it means I’m never completely unanchored. For me, that ultimate goal is competing at the Paralympics. The second would be to have equestrian (horse-riding) as a consistent part of my everyday life again.
From there, I narrow the scope:
Once that’s written out, I check my thinking with someone to fill any gaps that I might have missed. Someone who knows me well enough to be familiar with my thought process but won’t give me a biased opinion.
Then I start executing the steps. It’s a long game but I genuinely believe it works. Following this approach got me back on my feet after the qualifying period, it got me to Japan, it got me to my current job.
I’m still on the same game plan, and my eyes are still on that “ultimate ideal”, and I’m going to keep chasing it or die trying pretty much.
Second, how you frame things in your mind is super important. A personal example, during my degree, I got to a point where I was struggling to see the point in continuing to study. My academic performance was average in contrast to how my sports performance at the time, where I had broken nine personal best times in the space of that week.
I spoke to my dad about it and he replied “getting a degree is essentially like a triathlon, coming first isn’t the key objective, finishing the race is enough of a win. People want to see your medal of participation (your degree) to prove you entered, endured, and completed the “race”.”
The way my dad framed his answer was super effective, because a) I’m a complete triathlon nerd and b) it was a frame of reference I could easily understand. I never complained about it again, and every time I hit a point of struggle, I reminded myself I was going to finish this damn triathlon.
Lastly, there’s nothing wrong with feeling lost, and the fear and anxiety that comes with it. Everyone goes through it, and it’s important you allow yourself to feel it in its completeness. Trying to deny how we feel about something often compounds the emotion. So I consider the first step of working through something is to acknowledge and accept that this how I am feeling at this moment. “I am feeling anxious… I am feeling depressed… I’m feeling fearful” - and that’s ok. We’re all humans, there will always be a hand to reach for, someone who will support: be it a parent, friend, or mentor. The bad feelings will pass and working through periods of struggles builds resilience and character.
Heh this is a fun question. Over the years, I’ve built up an entire vocabulary for describing my condition and how it affects me in a way that easily digestible and often humorous for all of us. I’m an avid non-fan of the term disabled and only use cerebral palsy (CP) as a technical term when people ask directly. Otherwise, I may as well be regurgitating a medical textbook. That’s part of making these things easier to talk to if I can entertain myself and others while we have that kōrero, all the better. I call myself a wobbly often. Amongst my friends, we normalised the term cripple, which makes a lot of people’s hackles go up. But let me frame it for you: A bomb is disabled, an alarm is disabled - so they stop working whereas a crippled chair is still functional. I still work; I’m just different. In my eyes, the reason disabled is the prominent word is because we haven’t been able to find or create a word that fits reality better yet.
At its core, CP is the result of brain damage or under development, both in my case. I was born at 23 weeks, so I wasn’t fully cooked. My umbilical cord was also functioning as a noose on my way out, so I suffered oxygen deprivation too, which caused some damage. The results are that I have a questionable relationship with gravity, and the signals between my brain and body get scrambled often.
That vocabulary I mentioned earlier that came about because I needed a way to communicate effectively with my coaches what I was experiencing. Over time I’ve come to articulate my CP as something like an almost separate personality in my head. We fight over the metaphorical remote that controls the body we share. We’re almost constantly arguing because there is so much I want to do, and the CP kind of counters with things like, “but, why?” “Are you sure?” Or sometimes a flat, “NO!”
A physical example would be trying to get myself to the edge of the pool deck to do a dive-start. The set up and motion is so similar to falling that my body fights the command altogether and I often find myself unintentionally walking backward away from the edge. To counter that, we broke it into five separate staged movements, so that I could complete the action with minimal internal fighting.
But it’s not all bad. Because of the CP, this vessel has a rather inefficient engine and needs a considerable amount of fuel to function. So I can eat whatever I like, but I struggle to hold weight because I’m just constantly burning energy. My brain has some interesting tricks it pulls when we’re fighting towards a common goal. My brain will turn off my pain and fatigue receptors if it’s an irritant to the goal at hand. Which is super handy but a double-edged sword. It can be dangerous and has put me in the emergency room more than once. The pain doesn’t go away; it just can’t reach the front of my consciousness till later. Like a delayed download if you will. That can put my body in a state of overdrive, which shuts down my digestive system and makes eating far less appealing.
That’s why I’ve developed a set of contingency plans (with professionals and friends) for when my body shifts in and out of certain modes. It’s part of why I value openness so much. Because I have a tendency to attempt to power through even when the warning signals start to flare, it lets people know where I’m at, it keeps people in the loop and gives them agency to call me out when they begin to notice things aren’t quite my norm. Which in turn, keeps me safe. I’ve also found that vulnerability offered is often given in kind. I live by example, and it creates a space for others to share in their own capacity, which creates a more supportive unit as a whole.
My automatic response is horses and swimming. They used to be the things my life orbited around. But ironically neither of those things are in my daily routine as they used to be. But they still bring me peace. On most days, food brings me joy — both cooking and consuming it.
Music is also a huge buoy for me.
Genuinely connecting with people and being creative is also a spark creator for me and I love to lose myself in a well-written story, I love being entrenched in the manifestation of someone else’s imagination. But also simple things, like snuggling into a warm bed buried under a pile of blankets. I work myself to the bone, so I appreciate my bed a lot even if I don’t spend heaps of time in it.
One of my takeaways from Festival for the Future 2018 and 2019 was that I want to build on my knowledge on Te Ao Maori and Te Reo.
I think it is an essential piece of the New Zealand identity that a lot of people aren’t connected with.
I’m not saying that everyone should be fluent (though that’d be neat), but it’s a culture that’s unique to New Zealand, that's reason enough to embrace and protect it. When I’m immersed in it I feel a lot more grounded and connected to the space and people around me, and I think that’s powerful.
I’m studying up on flow theory which is essentially the psychology of optimal experience, which I understand from a sports performance perspective, but the book I’m reading by Mihaly Csikszentmihalyi is a more broad application. I’m also about to dive into some learning around open data frameworks and data quality.
Something I’m pondering is how to support people who are getting close or facing burnout and millennial fatigue. There are some wicked issues out there and so much that we worry about and want to impact, but the sheer quantity and weight of it can sometimes be completely overwhelming. I’m thinking about how we can process that without feeling like self-destructing or spiralling in hopelessness.
I consider myself incredibly fortunate to be connected with some incredible wāhine, whom I think all have some amazing stories and knowledge to pass on. Wynona Dekker is a constant inspiration to me, for all the mahi she does and raising her own mokopuna as she does it. She’s one of the most amazing people I’ve had the honour to work with and call her a friend. Aimee Whitcroft is another amazing mentor and friend, she inspires so much curiosity in me to keep learning as much as I can about so many things, and she’s a shining example at being at home with ourselves even when the world thinks you strange. Laura O’Connell Rapira and Kassie Hartendorp also have incredible stories to share.
