Riding in Cars with Activists
“Instead of letting the world turn me into a disability object, I have insisted on being the subject in the grammatical sense: not the passive “me” who is acted upon, but the active “I” who does things… I find various odd adventures… And I tell stories… for me; Storytelling is a survival tool, a means of getting people to do what I want. I’m talking mainly about getting people to drive my van.”
– Harriet Mcbryde Johnson, Too Late to Die Young: Nearly True Tales From a Life.
Somehow, miraculously, we – that’s Polly, our friend Katarina and I – have managed to fit two wheelchairs, three bags, a bedroll, and ourselves into the hired mobility van. With sprints back to the house for cutlery, bowls, and snacks – these made by my able-bodied companions – we are en route from Wellington to Ōtaki, a mere half an hour later than intended.
The two minor road bumps happen early. The first is that seated in my electric wheelchair, my head almost grazes the van roof: Oh, that’s why the hire guy asked for your height… muses Polly as the penny drops for both of us. The second thing is that the very accommodating van hire guy has left his glasses on the dash. Katarina holds these up to her face, confirming that they are indeed a prescription pair. This is unfortunate.
But I am feeling too selfish to care about whether our benevolent transport provider owns a second pair of spectacles. I am selfishly present and focused on the odd, little adventure out in front of us. I am focused on anything that will inch us closer to our destination. Even having been once before, I don’t entirely know what to expect from Ōtaki Summer Camp this year.
I know that there will be good food, music, and wide-ranging political discussion. I know that our hosts, the Leeson’s, have their own sense of Pākehā Catholic manaakitanga, inclusion, and adaptability that has greatly strengthened my skepticism when anyone else – particularly anyone with money or political power – apologetically but resignedly tells me that including disabled people at events is too expensive or complicated. How can it be when ramping their home and ensuring I have a comfortable and accessible bed for the weekend was just second nature to people who, until two years ago, had never met me? The insistence that inclusion is an impossibility feels more like a lack of will. Simply put: I know I have to be there. And now, here I am, making my way with two close friends who, beautifully and incidentally, also know each other – something I had forgotten until they hugged over my threshold earlier that morning.
The major challenge on our first visit to Ōtaki had been out of anyone’s control. Navigating farmland in a wheelchair – any wheelchair – was always going to be an experiment. But the wheelchair I had two years ago was particularly unsuited to the task. Its tiny front castor wheels and titanium frame were definitely built for the sort of city-slicker-crip that I am on any regular week or weekend.
Since then, Polly and I have a fair bit of experience with rough terrain. The last time we went to Ōtaki, we learnt about the SOUL (Save Our Unique Landscape) campaign on the outskirts of Auckland where mana whenua were defending their land against development. I questioned Pania Newtown, the spokeswoman for the campaign – in stumbling Te Reo Māori, which she graciously untangled and translated for this Pākehā with a child’s tongue and her attentive audience. What could we do to support her whānau from the capital? I imagined then that actually being there – which was the rallying cry of her kōrero – would be impossible for me.
Everyone has variable spoons, energy for activism, and different ways they can engage. God, being in the world as a disabled person can sometimes be a form of activism in itself. The act of getting your basic needs met the fronting up every day. I am definitely against dismissive terms like slacktivism that scoff at some of the very ways disabled people are politically connected and active and social – just because these are often through the internet.
Still, for me, I’m disabled can sometimes be a comforting and too easy excuse for not showing up, for deciding instead – I’m off the hook. It is valid to find the logistics exhausting, but it can prevent me from following my gut, acting on my values, offering anything more than symbolic solidarity. However, on the structural identity front, there is the glaring fact that I’m the seventh generation on my father’s side (and I don’t know how many on my mother’s) and living on stolen land.
At Ōtaki, Pania’s talk had lit something in both Polly and I. It was their – Polly’s- idea to go. They split the driving with another support worker-friend Maddi to get all of us up to Ihumātao to be on the whenua with the kaitiaki there. And I find myself dancing joyously under a wide, white marquee with Pania herself. Her hug and her, Thank you for coming are gestures that see and understand the logistical challenge of my being there ā tinana.
And I find myself sitting on the front line next to Catherine Delahunty. This woman is always a touchstone for me, and she spends the time one morning after breakfast holding the line and telling me stories of my Pākehā activist lineage. She commiserates that somewhere in the strands of it all, one of my nineteenth-century colonial forebears was a Wellington cop turned Taranaki farmer. She responds dryly: Oh well, you can’t have everything. It’s not your fault. I look out at the lingering blue uniforms congregating near their pop-up tent and branded banners: Safer Communities Together.
And I find myself giving an East Coast wave to another wheelchair user – a man who I assume is mana whenua. This is a motion that wheelchair users as much as East Coasters have perfected. It is useful where armrests, joysticks, and the difficultly of parallel parking prevent us from embracing each other. He nods and says Tēnā koe. Meaning: That’s you. I see you. My nod and Tēnā koe back say: That’s you. I see you.
I also find myself getting caught in gravel. I feel a swirl of emotions about this as I don’t want to take up space or take away from the kaupapa. These emotions boil down to having shown up to be active and finding this tempered by my need to take care of my body. The shame I felt at knowing I would later slip away from the whenua to sleep in a hotel that probably wouldn’t exist without the airport extension – which had been built with flagrant disregard for the urupā that was already on the land and the tipuna interred there. But it also feels right to be there.
There is a practical, personal outcome of being there too. It is because of Ihumatao that we know a van – and with it, the ability to take my electric wheelchair – will be a game-changer when going away again. Being the more practical of our duo, once again, Polly arranges it.
The organising committee for Ōtaki Summer Camp has always had my friend Mary as an active part of it. She is a gentle and generous disability activist in her own right. She always seems to manage to be staunch and uncompromising but in an open and inviting way that I can’t emulate. For me, it is more likely to come out in frustration. Mary’s presence immediately puts me at ease about being there because I know disabled people’s inclusion has been thought through.
I am often wary about being part of activist spaces that are outside of the Disability Rights movement. I enter these spaces with the sense that I will have to explain myself, my context, my oppressions, and all the ways these have been disregarded in this pretty vision that is being dreamt up in front of me by my non-disabled peers.
This is particularly true when it comes to environmental movements. If you ban single-use plastics, for example, this has a whole series of impacts on disabled people’s dignity, safety, and independence, ranging from not being able to effectively sterilize reusable straws and utensils, thereby putting people at risk, ignoring the need for the plastics used in the safe and sterile packaging of many medications that disabled people rely upon.
Population control arguments – have two babies and two babies only – freak me out. They presume that each individual (read: Pākehā) person needs the same amount of resources to live in dignity. I know that disabled people’s lives simply are more resource-intensive if they are to be lives well lived. So, where does that leave us in a world of prenatal screening, austerity and self-reliance, and a pervasive, institutional fear of disability? The answer reeks of eugenics. And yes, that’s a scary thought. Although it might seem to be, it is hardly alarmist or science fiction when we consider that disabled people were widely institutionalised for decades – and abused in those institutions – with the last openly institutional “home,” Kimberly, closing as recently as 2006. The closure came only after extensive efforts of the disabled community and their allies.
And another thing – the absolute bugbear of environmentalism – those fuel-guzzling cars. I have realised: I am a greenie, and I love cars. My friend, the indomitable Dr. Esther Woodbury, helped me reconcile this with my inner, aspirational, tree-hugging politic. Her Ph.D. thesis was “an 80,000-word love letter to [her] car”. In it, she explores cars as a significant part of disabled people’s very real freedom, independence, good mental health, and bodily autonomy. She writes about the high value that society places on independence and the value that disabled people also place on this, but that it takes on a particular quality for disabled people: “Almost all of the participants in this study talked explicitly about how being able to drive themselves around, gave them a sense of independence that they valued very highly. In fact, one of the key fears that people talked about for their future was that they would lose more of their independence than they already had. Independence is valued very highly by most segments of the population, and this was reflected in how people talked with pride about the independence that they had, particularly when that independence was hard-won.”
She writes about disabled people’s fear of losing the kind of independence that comes from driving. The thinking underpinning a shift to more sustainable alternatives often seems to discount this, instead presuming that public transport users are non-disabled. This assumption downplays the necessity of those individualised and therefore vilified forms of transport (cars) for navigating environments that were not built with disabled people in mind.
Esther’s perspective resonated with my own ambivalence about how to be part of activist spaces that also weren’t built with disabled people, with me and my community, in mind. We want to be there. We want to show up, be part of the collective but in a way that still allows us to be as self-reliant as anyone else in this new world. Asking us to give up the freedom and independence afforded by cars is asking us to shrink our worlds. Even the still individualised alternatives – such as electric cars – may be out of reach for many disabled people who, as a group, make around $200 less per week than our non-disabled peers.
The car, as well as being one of the most concrete examples of the ways disabled people’s needs are lost in the conversation about the change the world urgently needs to undergo, also metaphorically represents the tension we have to hold in getting there.
Disabled people are used to living with compromises: prioritising disability needs or other sides of ourselves. Disabled people are used to constant decision-making about when to ask for help, and striking this ever-moving balance takes work. We are not always successful at it, being just as steeped in our culture as anyone else, but we are in constant practice. It is an understanding of this balancing act that disabled people can offer in reimagining how we live.
In examining the direction of travel needed, non-disabled activists often talk about ideas of collectively and interdependence (this, as opposed to independence, suggests more of a flow between people. ) These concepts are the obvious anthesis to Pākehā capitalist individualism, and I can see their attraction; I too am pulled by the thought of them, I idealise them. My independence is less spontaneous than other people’s. It requires planning, and it requires other people to be on board for the ride. What that means in practice is, when thinking about how I will access the world, when I think about how I will be an activist in it, I also have to factor in the potential, availability, wellbeing, emotions, and sometimes opinions of people around me. I have to be flexible. Most of the time, I am okay with this. But know that the articulation of my independence is different: Independence is getting people to drive my van.
Although there are decades of Disability Rights thinkers supporting my concept of independence as legitimate, I, like everyone else, was born into a culture that sees independence as the oversimplified ‘standing on your own two feet.’ Reminding myself of the value of the ways I ensure my independence is a daily act of resistance. For this reason, when political movements present solutions that ask me to surrender things like cars, a technology that widens my world, I react against them – to the degree that might lead some people to see my values as pro-individualism. My independence feels too hard-won to give it up for a collective good that, structurally speaking, is still learning to make space for me to belong.
Image of Street in Te Aro Wellington by Andris Romanovskis for Unsplash.