Below is most of the raw interview (with the exception of some in-person chat about Martin Pistorius and Barney the Purple Bastard) for the Idealog article White-Mirror-Episode-Two-Mindedness.
I’m uncomfortable talking about myself, and the idea of being interviewed for a proper publication made me throw up in my mouth. But the fear of attention gave way to the importance of taking any offered opportunity to amplify the message. The team behind the piece are excellent humans, however the tyranny of word count meant there was disability rights detail I tried to communicate that didn’t make it into the article. Hence posting this:
1. What’s your big, hairy, audacious personal and professional vision for 10 years from now?
I’m gonna disappoint you here: I don’t have much in the way of big, hairy audacious visions. For me, at least, they’re not helpful. I respect people who have them, I know investors get excited by them, and marketing gurus thrive on their hype. But as far as effective personal motivation goes, they’re poison. I’d love to have the Bill Gatesian drive and 750 words a minute of near perfect reading retention to launch at lofty ambitions. But I’m a slow reader and a modest achiever, riddled with imposter syndrome. The thought of aiming at something overwhelmingly massive is… well.. overwhelming. The sagest advice my dad ever gave me was something along the lines of: “If you stagger in a vaguely forward direction, you’ll make forward progress”. So that’s generally what I do.
However, I also want to do everything (counter-intuitively, in light of my reading speed, I’m a quick study in the doing). So that’s what I try to do on any given project — take on as many roles as possible (researcher, producer, writer, director, editor, camera/drone operator, VFX artist, sound designer, software developer, web/graphic designer, workshop facilitator, professional thanker of friends and strangers who do everything else with an unfathomable generosity and kindness…). This is also a cost-conscious thing — I guess I’m cheap — I figure if I wear most of the hats myself, I don’t have to pay other people for their fancy hat wearing abilities… I suppose my personal and professional vision is to keep fashioning new hats for myself, and wear them in a capacity that’s useful for others. Particularly for people who don’t get a lot of fancy hat wearing attention otherwise. I want to be useful and I want to be an effective ally. Especially to those without access. But not fall into pity traps or adopt that ugly, condescending “white saviour” (or “abled saviour”) complex that seems to be unnervingly common. Key to that is a critical catchcry of the disability rights movement: “Nothing about us without us” — co-designing with, not just for. So it’s vital that whatever I do, it continues to be in partnership with people who have the lived experience (actually, that needs to be ramped up).
I do have one moderately massive project I’m early stage on — though I’m trying not to talk too much about it (I read some research recently around how talking about projects early reduces the probability of their completion — so true for me — you get all the social reward your brain needs from the talking about it, dissipating your motivation to push the project into reality). Super high level: It’ll be a game (hopefully unlike any game before it) with social impact that should reach a large mainstream audience with fun, funny, meaningful, emotional, immersive madness. A game that, by embracing the principles of universal design, is accessible to gamers of any ability. I know you asked about a 10 year vision — if I carry on with my “doing all of the things” thing, and I get caught up in my usual excitable scope creep, it may yet take me that long.
2. What’s the biggest problem you’re trying to solve with Talking Mimes?
The disability rights movement is one of the youngest, most fragmented and overlooked of the civil rights movements. Even in these comparatively woke times, disability is almost always the last item on diversity check-lists, if it’s there at all, resulting in groups and workplaces that are at best “diverse-ISH”. It is changing, e.g. the social model of disability (see Talking Mimes Practical Tips for an Inclusive World) is now the internationally recognised way to view and address ‘disability’ — the United Nations Convention on the Rights of Persons with Disabilities (CRPD) speaks to an official paradigm shift. But the implementation, real change, is hopelessly slow and so very long overdue.
You’ve probably already seen this on the website, but it’s a solid précis for Talking Mimes: “To start a practical conversation around safety and respect. To actively reject the soft bigotry of low expectations. To peel back the layers of alienation and teach us how to be less accidentally condescending arseholes, and more on-purpose good humans.”
I don’t think many people set out to be patronising and step on other people’s dignity, it usually comes out of fear and ignorance. Or more accurately — a lack of education. I shudder when I think of times I’ve talked down to people in the past, and the power differentials I’ve benefited from without thinking. So, educating out fear and ignorance is a large part of what we’re trying to do.
Really, though, we’re trying to solve a few problems at once with Talking Mimes. Sorry, I feel like I’m going to fail to narrow things down effectively for you here — it’s hard not to get lost in the details when the details are all so important. To be blandly broad: I/we want to transform attitudes and behaviour towards people with access needs. To help tackle the interpersonal and ultimately systemic issues that make up the largely invisible oppression of people with disabilities.
To get some of the details out of the way, here’s a non-exhaustive list of issues we try to cover with practical and emotional education in the experience and workshops: Accessibility (including the social, micro and macro-economic cost of failing to consider and implement it), power differentials, victimising language, disability representation in the media, inspiration porn, safety, dignity, privacy, respect, independence, the power of getting a voice (literally a physical voice, for people who are non-verbal), disability confidence (to enable and encourage positive interactions that might otherwise be avoided out of fear), the unnecessary financial and emotional pressures on caregivers and family due to systemic/policy failures, lack of support and consistent information, the many myths and biases around disability…
Where Talking Mimes is most practically and effectively problem solving right now is in training people who work with and around people who have disabilities. It was astonishing to get the impassioned feedback we got when we premiered the experience at an international assistive technology conference: People were so emphatic about wanting it for their hospitals, schools, assistive tech and OT/SLP training businesses, respite care facilities, NGOs, family and friends…
Prior to researching for the project I had this assumption that people in the helping professions, and families of people with access needs, already had all the insights I was gathering. Turns out even seasoned professionals get empathic intel and genuine practical value from the experience.
One piece of heart-lifting feedback came from a woman in the US who’s been the primary caregiver for her daughter, who has locked-in syndrome, for over 20 years. She contacted me weeks after having gone through Talking Mimes to let us know it had helped her make a difficult decision in advocating for her daughter. She’s since bought an Oculus Go to run the experience and evangelize the workshop herself. It’s awesome when Talking Mimes gets deployed in institutions and businesses, but there’s something extra cry-your-face-off beautiful when it’s a family.
3. What’s your story? What makes you the right person to tackle this?
I don’t know that I am the right person (refer “riddled with imposter syndrome” above), but I have a will to be useful and a growing skillset to bend to the purpose.
I had a difficult adolescence psychologically — severe depression punctuated by multiple suicide attempts. It was made worse by the two-fold guilt I felt for a) putting my parents through the secondary trauma of a suicidal child and b) growing up in relative privilege with a loving supportive family — what right did I have to be depressed? Relative to all the people in the world who have to contend with real external pressures and grotesque social injustice… You only have to look at the skew of suicide stats towards Maori and those living in deprivation in NZ, or the global correlation of disability with depression and suicide…
I think, though, the depression has given me strength. The mental toolkit I developed to survive my own mind made me more resilient in the long run. And the experience of mental illness has given me insights and sensitivities I wouldn’t otherwise have. This strength from weakness (or perceived weakness) has been a common theme for me (and also the theme of the future project I’m trying not talk about).
With one foot in the film industry for a while, I won a couple of things, got paid actual proper money to write, and enjoyed a modicum of international success with a short film (including even financial success — which was a surprise — I didn’t know that could happen with a short film). Turns out I have some story telling chops, or at least a little talent for making people laugh and/or cry. Evidenced most keenly when I started seeing people react to Talking Mimes.
The often highly emotional reactions would, not uncommonly, culminate in tears. It’s a strange cognitive dissonance, feeling good about making someone cry — being at once concerned that I’ve delivered some measure of trauma, but also gratified that the piece is working to full effect. You can see a similar dissonance play out in them too, as they tearfully recount how emotionally difficult it was, but at the same time talk about how wonderful it is and insist all their friends and colleagues go through it too.
Less complicated is the delight when you make someone laugh. An important component of Talking Mimes are the moments of fun and dark humour — something that the disability community has in spades, and gushes just as freely from me.
Finally, I think regardless of whether I’m the “right” person to tackle this, I have the freedom to. With my lucky accident of birth, a supportive family and a flexible day job (fullstack coding business software), it’d be selfish to squander my privilege.
4. What’s your earliest and most existential memory?
Falling face first down concrete stairs. I believe I was around 2yo. Like most early trauma memories, it felt pretty existential, but I don’t think it’s imbued with the kind of meaning you’re looking for — sorry!
5. What’s the most profound thing you’ve experienced in your work with Thought-Wired/Talking Mimes?
Maybe it’s because I’m primed for it, but I see profound examples of “strength from weakness” or “perceived weakness is actual strength” in the disability community all the time.
One that’s stuck with me is a story from a friend and colleague who is non-verbal due to CP. A friend of hers was severely depressed, had attempted suicide a couple of times, and looked to her as a confidante. Because using her communication device was slow, she was unable to respond quickly. This made her a superb listener, who chose her words carefully, and never interrupted. While she was frightened that she was letting her friend down, by failing to respond in detail, her friend (who survived and went on to become a crisis counselor) later confided to her that she had helped her greatly through her listening and support. In my friend’s words: “Sometimes no words are better than a lot of meaningless words”.
Then there’s the late Stephen Hawking’s phenomenal brain. His disability forced him to do complex modelling in his head that his theoretical physicist contemporaries could hand off to a computer simulation — bashing out code with a keyboard. Because he had to keep it all in his head, Stephen was able to make leaps of intuitive genius that others just couldn’t see. They entrusted much of the work to an external device and dealt with information piecemeal in their minds, while Stephen saw the whole system at once.
Or Kiwi, David John O’Connor, who was paralysed from the neck down in a rock-climbing incident. In his superb words: “If regaining my physical wholeness meant that I must lose the mental and emotional lessons I have learned through the suffering and the anguish, I would not want to change. I am more complete and whole as a person now than at any time before my injury. I have achieved a knowledge of self that illuminates everything clearly. It is like a key that unlocks a chest full of priceless treasures. It is the paradox of my disability.”
More generally, there’s the example of the super human listening speed of people who are blind. Hearing a screen reader set by someone who’s been blind for a while, to my sight-hindered ears, it’s an incomprehensible blur of noise. Parts of their cortex that would otherwise be used to process light have been remapped for sound, allowing them to attain listening speeds of 800 words per minute. So, people with vision impairments can take in information even faster than Bill Gates. For comparison, the average person speaks at 120wpm and reads visually at around 250wpm.
6. How did you get into this work?
Six or so years ago I saw the list of speakers and exhibits for an electronics show in Auckland. One of them was Thought-Wired — talking about consumer EEG devices. I’d had some experience with EEG at uni, and was excited by the concept of consumer grade devices. Dmitry (Thought-Wired’s CEO) stood up in front of me, I think 3 other people, and a sea of empty seats (everyone else was gaming on the main floor). The special subsection of murphy’s law reserved for tech demos was in full effect, and everything fell apart. It was an endearing disaster (one that the universe made up for just last month when Dmitry gave an excellent talk at TEDx Auckland, working tech demo and all).
When I visited their kiosk, the rest of the team delivered a slick counterpoint to the on-stage disaster. Sarv and James (Thought-Wired’s co-founders), expertly ushered me through demoing the devices myself and explaining that their primary customers were people with disabilities. I fell in love with the company there and then. And like a love sick teenager, I threw myself at them and demanded they use me, and use me for free. They happened to be building the software on a platform and a language I was intimate with. So initially I was a free coding resource for TW. Sort of free — I suggested that instead of paying me, we record the hours I work, put a dollar value against them, and record that against the GL. Then after the company broke even, we’d use that accumulated value to gift products and services to those with the greatest need and least financial capacity to meet those needs.
The actual software development work was short lived. I realised my other skills would be better utilised, when we ran out of runway and had to produce collateral for a crowd equity raise.
I pumped out the Pledge Me equity campaign video, hit up some kindly generous family and friends in design, business strategy, tech and media for an assist, and the campaign smashed it’s target by almost 150% (I don’t mean to imply it was all because of me here — far from it — the TW team are amazing humans that I’m just lucky to tag along with).
The problem space Thought-Wired operates in is terrifyingly difficult. Even though we made a smart pivot on the tech, we were burning through the crowd equity and knew we would have to focus on raising from more traditional sources. This is where Talking Mimes was born. If you haven’t seen it already, the “Why” video on the website details the genesis, and the pivot from pitch fodder to educational tool: https://talkingmimes.com/#Why
Sarv (TW’s brilliant and sensitive research psychologist) and I worked closely together on the research for Talking Mimes. On top of the interviews and case studies, she also discovered some worrying literature around immersive simulation and disability, as well as VR and behaviour change in general (more on that below). While well-meaning, there’s a lot of problematic (and to be frank, insulting) disability simulation work in the world. And research that shows many implementations just don’t work, or worse have the opposite of the intended effect on behaviour.
We spent about a year in research, working out how to make it work in a way that was authentic to the lived experience and could drive actual behavioural and attitudinal change.
Having fallen hard for Sarv over that period, our professional relationship suddenly became very unprofessional. During post production on Talking Mimes, I developed and honed my VR skills on an interactive piece with the smallest possible intended audience:
7. How does your technology augment and facilitate this impact?
In a better world, people, particularly people in power, would just listen directly to people with the lived experience. They would listen and act on the received insights and instructions about how to make the world universally accessible, and stop oppressing people by default with their unthinking ableism.
In this worse version of the world, the one we live in, where few people listen and fewer act, we need to employ tactics to capture attention and deliver messages that stick and drive change.
Maintaining attention is hard. Harder still in the age of digital devices. Research suggests we average around 50% attention in a meeting or learning situation. The other half is “monkey grooming cat friend” videos, and day dreaming about marrying your co-worker. Virtual reality, though, forces you to attend — everywhere you look and listen can be designed to deliver the message, and your digital devices can be silenced and put out of reach in actual reality.
You can pack so many teachable moments into a VR experience. And even the most egocentric of subjects can have their empathy supercharged when they virtually embody another. Experiential learning is richer and stickier than traditional education methods. Or rather it can be. If it’s done right. Which it often isn’t.
Some of the research Sarv unearthed indicated that while warmth and other measures of empathy might be increased by disability simulation, so too can confusion, embarrassment, anxiety and helplessness. Worst of all, stereotypes can even be reinforced, attitudes about interacting remain unchanged, or avoidance behaviour actually increased. It looked grim. There was also encouraging research around VR assisted empathy and education, but it was imperative that we did everything in our power to meet the issues raised by disability activists and commentators, and the scientific literature.
A big issue with a lot of disability simulation is it’s focus purely on the “impairment”. You can’t give someone a sense of what it’s like to be a person with a disability, if all you’re showing them is disability. So Talking Mimes focuses on the person, a whole human being. The best way to do that is through narrative. We best understand the world, and each other, through stories. And the most powerful stories are those based in truth. So that’s what Talking Mimes does, immerse people in a whole human through a first-person story based on true experiences.
By itself, though, even a well-crafted experience still runs the risk of maintaining, strengthening, or even facilitating biases and myth. We could see that play out for the occasional participant who would come out with things to the effective of “thank god it’s not me” or “I just wanted to die”. Because they’re thrust into a completely different mode of being, and they’re only there for 12 minutes, they only get the shock of change, and don’t get to experience the extraordinary adjustments and mechanisms people with disabilities employ and develop over time. Or those fascinating adaptive components of the human condition like the “hedonic treadmill”.
To counter this, you have to have facilitated conversations and activities to supplement and expand on the experience. So Sarv developed the Talking Mimes companion workshops, using an empirically validated experiential learning framework, to do just that. Having delivered them personally and seen how engaged, and insight-generating, participants are through it — and collecting data to supplement anecdotal observations — it seems to do the job good and proper.
8. Tell us a story about the human condition and how your technology has improved this.
Until all of us are included, all of us are excluded from a fair and just society. In the meantime — ignorance, as the font of prejudice, gets society ugly-drunk with injustice.
Seems to me the human condition is largely suffering, and the “beautiful struggle” is another beautiful lie.
It’s hard for me not to fall into misanthropy. Bombarded with evidence that humans, on balance, value and reward greed, narcissism and xenophobia. It feels like there’s an unending epidemic of egocentricity. I want to subscribe to optimistic views on the human condition, but having met card-carrying sociopaths, hearing so many heart-breaking stories of neglect and abuse, and knowing some of the science of empathy… One of the most excellent experiments I’ve come across is also one of the most damning: Subjects are put in front of a grid, like a Battleships game board, but with different coloured trucks in place of ships. They’re told there’s a director on the other side of the board who will give them instructions about moving trucks, and that the director can’t see red trucks. When the director gives them an instruction like “move the top left truck three spaces to the right” and the top left truck is red, the participant should obviously move the next most top left truck. Only ~50% of subjects got it right. To prove it wasn’t just a failure to understand instructions, or something else in the experiment design, they swapped the human director out for a computer program. Participants were told that the algorithm would give them instructions for non-red trucks only. Under this condition 99% of people got it right… So… half the sample population lacked basic “theory of mind” empathy skills…
This is just one experiment, and “lack basic empathy skills” is an over simplification. But the egocentricity errors it illustrates are frequent. Empathy is cognitively expensive.
Talking Mimes attempts to counter the empathy deficit that seems so dominant in the human condition. It does that by taking away the difficult task of modelling other minds, and putting your mind in the body of the other — so you don’t have model it, just experience it — something 100% of people can do.
9. Describe the world you’d like to pass onto the next generation?
That’s such a big question… One with a truly flat power structure. Where universal design is universally embraced. Where ableism, along with all the other evil ism’s, have evaporated to nothing (you’re not asking for realism here, right?). And a world where science denial is a curious footnote in history. Ignorance, willful or otherwise, and the tide of injustice that flows from it, would struggle to flood a world that’s sandbagged with the rigours of the scientific method.
I’m thinking you might want a more functional description for Talking Mimes too: “Talking Mimes is immersive, emotive education. A virtual reality experience and workshops created to transform attitudes and behaviour towards people with disabilities. It takes a unique whole human approach, based on true stories, and was carefully created in partnership with colleagues and friends who run the gamut of (dis)ability.”