Month: January 2019

Trust & what it takes to get there

Trust & what it takes to get there

Someone recently asked me what it would take for me to feel good about Autism Speaks, a large, wealthy organization that has done repeated and significant damage to autistic people and has claimed a desire to change. My first reaction was, not my fucking weight to carry. They have to figure it out. I’ve already had enough burden from them, between fighting their stigmatizing media and hate messages directly, and dealing with the discrimination and misinformation aftermath indirectly. It’s not my job to soothe my oppressor; it’s their job to soothe me.

But as the days went by, I realized that I did know the answer to the question, because as a community based participatory researcher who stands on the academic side, no matter how intersectional I am, I have a lot of power and privilege. And academic researchers have abused that power and privilege, and harmed people; ours (human subjects research) is not a pretty history. Maybe I didn’t do those harms personally, but they are a part of the legacy of every researcher out there, and abuses persist. I work inside a system of oppression. I do not presume–ever–when I walk into a meeting with community collaborators that they will trust me not to continue that oppression just because I say that I’m on their side.

Sharing power and building trust is slow and deliberate. It means listening, and getting out of the way, giving space for others. It means giving them more space than I give myself, because as the person with the educational and socio-economic privilege, I’m already given more space than them as a matter of unconscious routine on the part of society. It means following through on the community’s recommendations–not once, not twice, not whining “oh I’m trying”–but over and over and over again, every time. It means that if I can’t follow through, or shouldn’t follow through, I have a transparent discussion with the community as to why, and get their ideas about alternative actions that might work just as well. Over and over. It takes time and it takes love. It takes a willingness to be pushed back on and maybe even yelled at. And if I do all that, and more, then maybe–MAYBE–I can expect to start being trusted six months or a year into the project. And that’s without having any personal history of not being trustworthy. That’s with the small amount of built-in trust for my intersectionality and history of disability and queer rights activism. That’s with the project being something the community asked for in the first place.

Autism Speaks has a recent history of raw, tangible hurt. Many of us are actively living the consequences of that hurt right now. Yes, the first step is admitting to having caused the hurt. But just saying, “we want to do better” and “look we did a thing you wanted us to do!” is not an instant recipe for “oh, awesome, now you’re my ally!” The fact is, building–or rebuilding–trust takes work, time, listening, backing down, making space, changing behavior, giving up power, accepting responsibility (even if it was someone else’s actions, you still chose to pick up their work instead of going elsewhere), doing things that might piss off your sponsors or make your life hard, and time: time, time, time, time.

So the answer to the question: What will it take for me to feel good about Autism Speaks? An extended number of years (five, ten, twenty? this isn’t set, but it will be more than one or two) with continuous evidence that they are listening to and following through with the community’s recommendations, every time. Every. Time. This can be done, seriously. Long-term evidence of continuous power sharing and willingness to engage in potentially painful (including possibly financially) change. Transparency about decisions to go against community wishes. All of those things that go into building trust with the people who you–or your field of work–have historically oppressed. There is no quick fix. There is listening, sharing, changing, hard changing, even harder changing, work, time, tears, love, harsh introspection, and more work, work, and time, time, time.

Science in the Fiction: Nonlinear Dynamics and Memes

My doctorate is in systems science. I study general ways to make sense of things that are too complex for the usual analytical approach of “let’s take it apart and see what makes it tick.” And by “complex” I mean non-linear. And by “nonlinear” I mean many things affect each other simultaneously, so instead of getting a behavior that makes a straight line–like if you made a graph of how much you turn the faucet on vs. how much water comes out–you get behavior that makes curves–like the progress of infection in an epidemic over time as it rises exponentially, comes to a peak, and curves down again as it runs out of hosts. In nonlinear systems, wholes are different from the sums of their parts. I study how to study things like weather systems, stock markets, social negotiations, and flocking birds. So chaos theory, game theory, system dynamics (and dynamical systems), systems thinking, and a slew of other shiny systems-y things end up in the sciences underlying my fictions.

I created the alien élan vitals in part out of desire to geek out on nonlinear dynamics and feedback in ecosystems in an entertaining way. Humans influence aliens, as aliens influence humans, and changes in the structure of the relationship between the two can vastly change the behavior of them both and their behavior as a whole. Sometimes this is to the benefit of both parties; other times, not so much. Kind of like the delicate balance between two large predatory species co-inhabiting the same forest.

The other part of why I created the élan vitals was out of long-standing fascination with zeitgeists, and the way that ideas can move large groups of people to action. What gives a meme legs? How can an idea move social consciousness? These questions have become increasingly urgent in today’s informational climate, where we can spread ideas at an instant to millions. So what if ideas were creatures, with ideas of their own, and they could be talked to? What if we were ideas to them, too, ideas they resonate with? What happens as we resonate with, and amplify, each other?

The élan vitals provided me with a means to explore with readers both nonlinear relationships in ecosystems generally, and feedback loops in the ecosystem of society and information. Which, to a systems geek like me, is super-rad!

Paperback and ebook available from; free ebook with paperback purchase! Also available in paperback and Kindle from, from Powell’s City of Books, or ask at your local bookstore.

Theme: Overlay by Kaira 2020 Dora M Raymaker
Portland, Oregon