Month: January 2018

Huygens Descent – Epic Space Music

After traveling aboard Cassini for nearly seven years, the Huygens probe descended into the atmosphere of Saturn’s moon Titan on January 14, 2005. It recorded the wind on the way down, along with with its radar and radio signals. The probe was designed to transmit its conversation with Titan for three to thirty minutes; it gave us ninety. Here’s my Epic Space Music about it.

Samples if you wanna make your own Epic Huygens Space Music:

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.

Review – Borne by Jeff VanderMeer

BorneBorne by Jeff VanderMeer
My rating: 4 of 5 stars

I’m a sucker for themes around making sense of trauma, and even if the rest of the book were complete drivel I would have enjoyed it for the traumatized characters/city/world. However, it’s also beautifully written and nicely weird. I may be spoiled by less mainstream fiction, but where the story fell flat for me was in not pushing itself as far as it felt like it could have gone, both in terms of the prose, and the weirdness and complexity of the story. It was a bit like “you set me up for an experimental symphony but in the end I kinda just got pop. It’s good pop, but I almost heard something I’d never heard before…”

View all my reviews

Short Story in Spoon Knife 3 Anthology

I am jump-up-and-down-flappingly giddy to announce that I’ll have a SF short story, “Heat Producing Entities,” in this year’s Spoon Knife Anthology! The anthology is likely to come out in May.

If you haven’t picked up copies of the previous anthologies, they are large, diverse, and wonderful–written by-and-for those of us who are neurodivergent, queer, non-gender-norming, disabled, mad, and often excluded from literature. I reviewed last year’s here. I am so excited for anthology #3, and so thrilled to be a part of it this year!

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