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.
3 thoughts on “Trust & what it takes to get there”
I feel like it is only agitation that forced them from their course of pretending and getting to say they want change, and it is only near-constant agitation in the future that will force them to actually change. If they get comfortable again, the five/ten/twenty years will extend to forever. Do you agree? And who’s responsibility is it to agitate?
I think this gets a bit at the question WHY are they saying they want to change? Is it because they genuinely get it, or because they don’t like the bad PR? If they genuinely get it, then they won’t need the agitation. If it’s the bad PR then agitation will be needed until they do genuinely get it. As to who’s responsibility is it to agitate, maybe I’ve gotten old and tired and cranky, but there are alternatives to them, and I’d rather put my energy there. I’ve managed to keep AASPIRE’s research funded through other sources, have been welcomed to work with foundations that do get it (at least a lot more than AS), so meh. Do we need them enough to care if they ever change all the way? I want them to stop hurting us, but beyond that I’m not sure I actually care about them?
It’s not just that rebuilding trust takes time; to me it seems like they’ve skipped the “admitting having caused the hurt” part and tried to skip straight to making somewhat superficial changes in language use and messaging, as if that’s the bulk of the problem.
A *start,* for me, would be if they were to actually admit to and demonstrate understanding of the extent of the harm they’ve caused.