Tag: advocacy

Backstory: Operators and Civil Rights

When I first started building the world of Hoshi and the Red City Circuit around 2000, I was mostly interested in why our world shits on its artists, scientists, and creatives. Autism and computer science were behind the core concept of the Operators, but autism was less relevant to the civil rights themes I wanted to explore. I wasn’t yet thinking in disability rights terms.

I was radicalized (woke) in the gay rights movement (LGBTQ+) of the 1980’s. I drew chalk bodies on the steps of city hall with Act Up, marched in the (pretty scary, actually) parades, and feared for my life under personal death threats in the town next-over from where Charlie Howard was murdered. I am not cis-gender; I am not hetero-normative; I am not safe in large parts of my own country. I wanted to draw these experiences into story, maybe to connect with others who shared them, maybe as the endless exorcism that those of us with histories of trauma have to endlessly do.

Still, I struggled to write about Operator oppression. The stories lacked focus and clarity. Too subtle, too nuanced, somehow not tied enough to other world-concepts. Why, besides the obvious danger the Operator technology poses and the weirdness of the Operators, were they so hated? Why are those of us in queer bodies, of queer hearts and minds, so hated?

I can be slow to get the point. It wasn’t until I became aware of the disability rights movement around 2005, and that it was my movement too, that I realized that weirdness itself is the reason we are mocked, hated, murdered. Neurodivergent or queer, non-Christian or creative, different is bad in a world where animal reactions go largely unexamined. In theories of altruism, labeling and prejudice is an unconscious means for deciding if people will cooperate predictably or not. Human animals gravitate toward those the most like them. The rest are to be feared–perhaps even killed.

Operator rights gelled around disability rights, fueled by my initiation in gay rights, because in my fictional post-gender, post-sexuality, post-race, post-post-apocalyptic universe (perhaps when humanity is down to barely enough gene pool to survive, such distinctions may, for just enough years to redefine “other,” matter less) the vectors of oppression become ability and occupation. But I hope that readers will see these stories as being for everyone who lives in fear, who is denied opportunity, and who is breathing the yet-unresolved air of institutionalized oppression. And I hope, as Hoshi’s world eventually does, our world too bends toward justice.

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

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.

Review of Hoshi by Wordgathering

I learned of a lovely review of my novel yesterday. This is my favorite part. This is exactly the sort of conversation I think we need to be having about disability in literature, and what I hope to trouble for mainstream readers:

“By telling the story from an autist’s point of view, Raymaker is able to invert the usual situation in which the main stream point of view is in the driver’s seat. Merely by identifying herself – the story teller – as the Operator, and those who do not share a similar experience of embodiment, as non-Operators, she manages to the put the reader who usually identifies as main stream into the margins.”

For readers who may also be Operators though, my intention is to create more heroes like us.

Also, both my sense of social justice and my ego is partial to this part:

“Science fiction has proven to be one of the most fertile genres for discussion of issues that affect the disability community. Recently, disabled writers have been wresting control of these narratives by authoring work themselves. Even without this context, Hoshi and the Red City Circuit would be a good read, but in that context it is much, much more. It is an important novel that anyone interested in the growth of disability literature should be familiar with.”

Many, many thankyous to Wordgathering: Read the full review.

Interview about Hoshi on Spectrumly Speaking

Becca Lory Hector’s latest Spectrumly Speaking podcast is up, with an interview with me. We talk about my novel, Hoshi and the Red City Circuit, and related topics. Talking with Becca is always delightful! Enjoy!

Autism in Literature, with Dora Raymaker, Ph.D. | Spectrumly Speaking ep. 54

From the website: “In this episode, host Becca Lory, CAS, BCCS and guest co-host Dena Gassner welcome back Dora Raymaker, Ph.D.. As you may recall, Dora is a scientist, writer, multi-media artist, and activist whose work across disciplines focuses on social justice, critical systems thinking, complexity science, and the value of diversity. Dora is a research assistant professor at Portland State University in the School of Social Work, where she leads community-engaged services research in collaboration with disability communities. Dora is a queer, autistic person with a deep love of soft yarn, restless cities, extreme writing events, and hard-boiled cyber-noir. Her latest book is titled Hoshi and the Red City Circuit. The three discuss Dora’s new book, how writing became important to her at a very early age, and why people with autism rarely are the protagonists in fiction.”

Heroes Like Me: Neurodivergent Protagonists in Hoshi and the Red City Circuit

Growing up, the closest thing to a hero like me was Charles Wallace in Madeline L’Engle’s Wrinkle in Time. Outsider characters sometimes came close–psychics and rebels, like Katie in Willo Davis Robert’s book The Girl with the Silver Eyes, which I re-read into pulp. Of course there were many heroes I loved–like Ged in Ursula LeGuin’s A Wizard of Earthsea–but none of them were like me. They were like the majority of readers, and I am…not.

I cannot overstate the psycho-social impact of having no heroes who share your race/gender/ethnicity/religion/sexuality/abilities. Sometimes, maybe, if you’re lucky you’ll get a villain, a “magical cripple,” or some poor, unfortunate stakes character whose purpose is to pity or turn a plot point. But never a hero. The underlying message is: people like you are never heroes. And then, the usual cascade of oppressions: you have less value, less agency, less virtue, less power, less less less. You will never be the hero in your own story or anyone else’s, but here’s a penny for your cup, now don’t you go scaring us you hear?

So, um, fuck that? I want stories with heroes like me. Preferably written by people like me. And since there really aren’t m/any, I will make them.

Hoshi and the Red City Circuit is set in a world where neurodivergent characters experience both immense power in their ability to control the interstellar network of quantum computers, and immense disempowerment through centuries of institutionalized oppression. Although the neural kink experienced by my characters is fictional, it is based on the way some of us experience autism. There are a number of complex reasons why I wrote this book, but one of the heaviest drivers was the need for neurodiverse characters in fiction to be taken from the margins into the center. Not as villains, not as charity or magical-cripple plot-points-of-convenience, or as faddish literary devices (I’m looking at you oh Curious Incident and all the harm you bring), but as protagonists.

In Hoshi and the Red City Circuit, the story’s hero, her best nemesis, and her worst frenemy are neurodivergent. They are heroes like me.

And maybe like you too?

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

Public Health PDX Style – Neurodiversity: Rethinking Autism

I gave a ten minute TED-style speech at the OHSU/PSU School of Public Heath’s series Public Health PDX Style on Neurodiversity: Rethinking Autism. Due to tech issues in the livestream, part the speech was not recorded. Below is the transcript of the speech in full. The recorded portions of the event can be found here; the second half of the recording is in the comments to that post.

            Hi there, I’m here tonight because I’m a research assistant professor at Portland State University in the School of Social Work, where I lead community-engaged social service intervention research to improve outcomes for people with disabilities. I have connections to the school of public health, and to my colleagues Christina and Katie, and when this program asked Katie to do a talk on autism, she thought of me because I’m one of her academic connections with expertise in the area.

            But, really, I’m here because of the neurodiversity movement, and our successes at shifting narratives about disability over the past few decades, because when I first heard the term “neurodiversity,” no one would have considered it to have a connection with public health at all, much less have wanted an autistic person to come speak about it. In fact, few people would have considered an autistic person worth listening to at all. I remember a reviewer on a federal grant in 2010 rejecting a proposal Christina and I put in for a healthcare study with autistic adults because, quote, “there is not adequate evidence that the self-reports of individuals on the autism spectrum are valid or reliable.”

            But, really, I’m here because I survived the first few decades of my life which were threatened not just because I was weird and disabled, but because I was non-hetero and non-gender conforming in that special time of the eighties when young people were being pushed off bridges to their deaths for the same in the next town over. I’m here because I was fortunate to have a family who valued my strangeness and supported my fumblings, and because I found community with other artists, queers, neurodivergent and disabled people, and fabulous freaks. And we protested and resisted, and drew bodies in chalk on the steps of city hall, and refused to have someone else tell us what we couldn’t do. And we protected each other from bulling and internalized oppression. I’m here tonight because I’ve been fortunate to find spaces where my diversity is valued and my disabilities supported, places like PSU, where I can do research to make better outcomes for the next generation of mes.

            More practically though, I’m here to fill in a bit about what neurdiversity is and give a sketch of where we’ve come from as a movement, where we are currently, and what our call to action is in the future. Because how everyone, me, you, as individuals and as a society, think about autism has really important consequences to the life outcomes of autistic people.

            So, what the hell is neurodiversity and why should you care about it?

            Think for a moment about biodiversity. Biodiversity is good because it ensures ecosystems can bounce back from disasters, that there are multiple pathways to ecosystem survival, increased individual and collective resilience. It leads to biological “innovation” or ecological solutions that work past problems, or disease, and the whole environment can get healthier.

            Neurodiversity is that with brains. Neuro instead of bio. Brain-diversity. Which gets ecosystems of societies all those good diversity things. Many different ways of thinking enables resilient communities, innovation and cultural growth, greater ***public health***.

            The idea of neurodiversity can be traced to the disability rights movement in the 1990’s, which drew, and still does draw, much of its inspiration from the civil rights movement. Coming as I did from the gay rights movement, too, there are definitely parallels there. It’s all about human rights, right. The autistic rights movement is probably the largest specific disability or sub-group within neurodiversity, but the term is used to cover all the different kinds of brains. At its heart, neurodiversity is a term coined by us, for us, and is connected to our call to action for increased disability and human rights.

            Neurodiversity is also for many of us connected to our identities as disabled people. Neurodivergent. I am autistic and neurodivergent. I’m guessing at least a few people have been cringing at me saying, “I am autistic.” So I want to back up a little with that. Shouldn’t I call myself “person with autism?” Shouldn’t I be separating the disability from my personness—isn’t it “correct” to always put the person first? I’d like to trouble that idea. I’d like to give you the neurodiversity perspective which is that it’s only important to separate the person from the thing if there is something bad or shameful about the thing. No one says, “I’m a person with maleness,” or “I’m a person with Americanness.” So from our perspective, putting identity first is a way of resisting narratives of stigma and shame around autism and disability, around brain diversity. I want to make it very clear, every individual person with a disability will have a preferred way they like to identify themselves, and you should use that individual’s preferred language, always, without lecture, especially if you’re not disabled yourself. But for those of us who take our neurodivergence as identity, as part of what makes us a person, to say, “I am neurodivergent, I am autistic,” chips away at stigma. Chips away at existing social narratives of shame and disease that lead to discrimination, reduced opportunities, that then lead to negative outcomes like unemployment, internalized stigma, greater chance of suicidality, vulnerably to violence, public health concerns, right?

            It’s a long game.

            Neurodiversity is also about community. I wasn’t part of the neurodiversity community when it first developed because at that time I’d never heard of autism. Autism wasn’t even in the DSM until a decade after I was born, and the first time I heard it applied to me was when co-workers at the tech company where I was highly valued–yet for some reason never allowed to speak with clients–just assumed I had already been diagnosed. But I was able to find the neurodiversity community pretty quickly after that online, and it resonated with me. It was, again, like my friends who helped me survive my twenties, a group of fabulous freaks keeping each other safe. Community is a protective factor. It is a facilitator of health.

            I want to bring up one last shift in how you might think about autism. In disability studies and social science we have various models of disability; two big ones are the “medical” model and the “socio-ecological” model. The medical model is still prevalent in health services, and treats disability as a disease or flaw within an individual that needs to be cured. The socio-ecological model, instead, sees disability as the result of a mis-match between a person’s needs and their environment–a mismatch that comes about because the needs of the majority are already being accommodated. By changing the environment the “disabling” conditions go away–case in point, tonight’s ASL interpreters–if we were somewhere most people were Deaf, we might instead need to provide hearing folks with noise reducing ear muffs to drown out the random sounds in the room that wouldn’t bother anyone else. Creating a more accommodating environment doesn’t make the impairment go away, and not all impairments can be accommodated. But it’s certainly a nice way to provide supports for better life outcomes without compromising all of that good stuff that comes of diversity.

            So some of you may be thinking, shit, I’m not neurodivergent, although I really wish I was! And others of you may be thinking, I have a different brain, but I’m not interested in making it part of my identity, that’s just not me. That’s cool. There are still ways the idea can be really useful to you as a doctor, a researcher, a family member, a member of society at large. Because you don’t need to take on an identity or join a civil rights movement to apply the idea of neurodiversity more academically to your daily life. You can use it as a lens in how you see your patients, your friends, that person on the bus who doesn’t make eye contact and rocks. You can use it as a check-and-balance when wondering “should I try to ‘fix’ this behavior, or is it okay to let it be?” You can use it in your public health research to consider how health issues and outcomes for autistic people might be about marginalization rather than medical dysfunction.

            So here’s my call to action for you all tonight. If you’re already a part of the movement, keep at the work. Social systems are huge and complex and take a long time to change. But we’re in a much better place tonight than we were ten years ago, fighting to convince someone we even existed at all. If you’re new to neurodiversity, think about it as a paradigm shift. Use it to challenge your assumptions about autism, and to consider both how neurodiversity contributes to healthier communities and how the way we, as a society think about autism effects the lives of those of us who identify as on the spectrum. Thank you all for being a part of this conversation.

Why My Credentials Matter to Non-Academics and People of All Ages

Why My Credentials Matter to Non-Academics and People of All Ages

It was ‘splained to me today that, at a talk where there would be non-academics and “a wide variety of ages” present, my academic degree does not much matter. Well, you know what ‘Splainer?

It matters a hell of a lot to that twelve-year-old autistic kid who never realized they might be able to grow up to be a researcher.

It matters a hell of a lot to that twenty-year-old autistic youth trying to convince their vocational rehabilitation counselor to help pay for their education–you know, the one who said autistics couldn’t succeed at high-level jobs, so why bother?

It matters a hell of a lot to that autistic person who never had a role model–

and the one who was about to give up on finishing their dissertation–

and the one whose parents and teachers and peers and the world told them they couldn’t but now they think maybe they can.

And it matters to those parents and teachers and peers who maybe now won’t discourage the next autistic kid from higher education, because they realize it can be done–and that could change the world.

It matters a hell of a lot to those parents realizing for the first time that their child isn’t doomed, that they can share the same dreams.

It matters a hell of a lot to the Autistic community, to see that I’m not just the token freak show at the normals’ event, rounding out the talk with the “real professionals.”

It matters a hell of a lot TO ME who walked coals and transversed the underworld and lives with scars on my belly and deeper where no one sees to get here.

It’s Not

Your

Call 

^This is what “check your privilege” means.

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