All posts tagged disability

[Direct link to Mp3]

Back on March 13th, 2017, I gave an invited guest lecture, titled:


‘Please join Dr. Ariel Eisenberg’s seminar, “American Identities: Disability,” and [the] Interdisciplinary Studies Department for an hour-long conversation with Damien Williams on disability and the normalization of technology usage, “means-well” technological innovation, “inspiration porn,” and other topics related to disability and technology.’

It was kind of an extemporaneous riff on my piece “On the Ins and Outs of Human Augmentation,” and it gave me the opportunity to namedrop Ashley Shew, Natalie Kane, and Rose Eveleth.

The outline looked a little like this:

  • Foucault and Normalization
    • Tech and sociological pressures to adapt to the new
      • Starts with Medical tech but applies Everywhere; Facebook, Phones, Etc.
  • Zoltan Istvan: In the Transhumanist Age, We Should Be Repairing Disabilities Not Sidewalks
  • All Lead To: Ashley Shew’s “Up-Standing Norms
    • Listening to the Needs and Desires of people with disabilities.
      • See the story Shew tells about her engineering student, as related in the AFWTA Essay
    • Inspiration Porn: What is cast by others as “Triumphing” over “Adversity” is simply adapting to new realities.
      • Placing the burden on the disabled to be an “inspiration” is dehumanizing;
      • means those who struggle “have no excuse;”
      • creates conditions for a “who’s got it worse” competition
  • John Locke‘s Empiricism: Primary and Secondary Qualities
    • Primary qualities of biology and physiology lead to secondary qualities of society and culture
      • Gives rise to Racism and Ableism, when it later combines with misapplied Darwinism to be about the “Right Kinds” of bodies and minds.
        • Leads to Eugenics: Forced sterilization, medical murder, operating and experimenting on people without their knowledge or consent.
          • “Fixing” people to make them “normal, again”
  • Natalie Kane‘s “Means Well Technology
    • Design that doesn’t take into account the way that people will actually live with and use new tech.
      • The way tech normalizes is never precisely the way designers want it to
        • William Gibson’s quote “The street finds its own uses for things.”
  • Against Locke: Embrace Phenomenological Ethics and Epistemology (Feminist Epistemology and Ethics)
    • Lived Experience and embodiment as crucial
    • The interplay of Self and and Society
  • Ship of Theseus: Identity, mind, extensions, and augmentations change how we think of ourselves and how society thinks of us
    • See the story Shew tells about her friend with the hemipelvectomy, as related in the aforementioned AFWTA Essay

The whole thing went really well (though, thinking back, I’m not super pleased with my deployment of Dennett). Including Q&A, we got about an hour and forty minutes of audio, available at the embed and link above.

Also, I’m apparently the guy who starts off every talk with some variation on “This is a really convoluted interplay of ideas, but bear with me; it all comes together.”


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(This was originally posted over at Medium, [well parts were originally posted in the newslettter, but], but I wanted it somewhere I could more easily manage.)


I just wanna say (and you know who you are): I get you were scared of losing your way of life — the status quo was changing all around you. Suddenly it wasn’t okay anymore to say or do things that the world previously told you were harmless. People who didn’t “feel” like you were suddenly loudly everywhere, and no one just automatically believed what you or those you believed in had to say, anymore. That must have been utterly terrifying.

But here’s the thing: People are really scared now. Not just of obsolescence, or of being ignored. They’re terrified for their lives. They’re not worried about “the world they knew.” They’re worried about whether they’ll be rounded up and put in camps or shot or beaten in the street. Because, you see, many of the people who voted for this, and things like it around the world, see many of us — women, minorities, immigrants, LGBTQIA folks, disabled folks, neurodivergent folks — as less than “real” people, and want to be able to shut us up using whatever means they deem appropriate, including death.

The vice president elect thinks gay people can be “retrained,” and that we should attempt it via the same methods that make us side-eye dog owners. The man tapped to be a key advisor displays and has cultivated an environment of white supremacist hatred. The president-elect is said to be “mulling over” a registry for Muslim people in the country. A registry. Based on your religion.

My own cousin had food thrown at her in a diner, right before the election. And things haven’t exactly gotten better, since then.

Certain hateful elements want many of us dead or silent and “in our place,” now, just as much as ever. And all we want and ask for is equal respect, life, and justice.

I said it on election night and I’ll say it again: there’s no take-backsies, here. I’m speaking to those who actively voted for this, or didn’t actively plant yourselves against it (and you know who you are): You did this. You cultivated it. And I know you did what you thought you had to, but people you love are scared, because their lives are literally in danger, so it’s time to wake up now. It’s time to say “No.”

We’re all worried about jobs and money and “enough,” because that’s what this system was designed to make us worry about. Your Muslim neighbour, your gay neighbour, your trans neighbour, your immigrant neighbour, your NEIGHBOUR IS NOT YOUR ENEMY. The system that tells you to hate and fear them is. And if you bought into that system because you couldn’t help being afraid then I’m sorry, but it’s time to put it down and Wake Up. Find it in yourself to ask forgiveness of yourself and of those you’ve caused mortal terror. If you call yourself Christian, that should ring really familiar. But other faiths (and nonfaiths) know it too.

We do better together. So it’s time to gather up, together, work, together, and say “No,” together.

So snap yourself out of it, and help us. If you’re in the US, please call your representatives, federal and local. Tell them what you want, tell them why you’re scared. Tell them that these people don’t represent our values and the world we wish to see:

Because this, right here, is the fundamental difference between fearing the loss of your way of life, and the fear of losing your literal life.

Be with the people you love. Be by their side and raise their voices if they can’t do it for themselves, for whatever reason. Listen to them, and create a space where they feel heard and loved, and where others will listen to them as well.

And when you come around, don’t let your pendulum swing so far that you fault those who can’t move forward, yet. Please remember that there is a large contingent of people who, for many various reasons, cannot be out there protesting. Shaming people who have anxiety, depression, crippling fear of their LIVES, or are trying to not get arrested so their kids can, y’know, EAT FOOD? Doesn’t help.

So show some fucking compassion. Don’t shame those who are tired and scared and just need time to collect themselves. Urge and offer assistance where you can, and try to understand their needs. Just do what you can to help us all believe that we can get through this. We may need to lean extra hard on each other for a while, but we can do this.

You know who you are. We know you didn’t mean to. But this is where we are, now. Shake it off. Start again. We can do this.

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There’s increasing reportage about IBM using Watson to correlate medical data. We’ve talked before about the potential hazards of this:

Do you know someone actually had the temerity to ask [something like] “What Does Google Having Access to Medical Records Mean For Patient Privacy?” [Here] Like…what the fuck do you think it means? Nothing good, you idiot!

Disclosures and knowledges can still make certain populations intensely vulnerable to both predation and to social pressures and judgements, and until that isn’t the case, anymore, we need to be very careful about the work we do to try to bring those patients’ records into a sphere where they’ll be accessed and scrutinized by people who don’t have to take an oath to hold that information in confidence. ‘

We are more and more often at the intersection of our biological humanity and our technological augmentation, and the integration of our mediated outboard memories only further complicates the matter. As it stands, we don’t quite yet know how to deal with the question posed by Motherboard, some time ago (“Is Harm to a Prosthetic Limb Property Damage or Personal Injury?”), but as we build on implantable technologies, advanced prostheses, and offloaded memories and augmented capacities we’re going to have to start blurring the line between our bodies, our minds, and our concept of our selves. That is, we’ll have to start intentionally blurring it, because the vast majority of us already blur it, without consciously realising that we do. At least, those without prostheses don’t realise it.

Dr Ashley Shew, out of Virginia Tech,  works at the intersection of philosophy, tech, and disability. I first encountered her work, at the 2016 IEEE Ethics Conference in Vancouver, where she presented her paper “Up-Standing, Norms, Technology, and Disability,” a discussion of how ableism, expectations, and language use marginalise disabled bodies. Dr Shew is, herself, disabled, having had her left leg removed due to cancer, and she gave her talk not on the raised dias, but at floor-level, directly in front of the projector. Her reason? “I don’t walk up stairs without hand rails, or stand on raised platforms without guards.”

Dr Shew notes that users of wheelchairs consider those to be fairly integral extensions and interventions. Wheelchair users, she notes, consider their chairs to be a part of them, and the kinds of lawsuits engaged when, for instance, airlines damage their chairs, which happens a great deal.  While we tend to think of the advents of technology allowing for the seamless integration of our technology and bodies, the fact is that well-designed mechanical prostheses, today, are capable becoming integrated into the personal morphic sphere of a person, the longer they use it. And this can extended sensing can be transferred from one device to another. Shew mentions a friend of hers:

She’s an amputee who no longer uses a prosthetic leg, but she uses forearm crutches and a wheelchair. (She has a hemipelvectomy, so prosthetics are a real pain for her to get a good fit and there aren’t a lot of options.) She talks about how people have these different perceptions of devices. When she uses her chair people treat her differently than when she uses her crutches, but the determination of which she uses has more to do with the activities she expects for the day, rather than her physical wellbeing.

But people tend to think she’s recovering from something when she moves from chair to sticks.

She has been an [amputee] for 18 years.

She has/is as recovered as she can get.

In her talk at IEEE, Shew discussed the fact that a large number of paraplegics and other wheelchair users do not want exoskeletons, and those fancy stair-climbing wheelchairs aren’t covered by health insurance. They’re classed as vehicles. She said that when she brought this up in the class she taught, one of the engineers left the room looking visibly distressed. He came back later and said that he’d gone home to talk to his brother with spina bifida, who was the whole reason he was working on exoskeletons. He asked his brother, “Do you even want this?” And the brother said, basically, “It’s cool that you’re into it but… No.” So, Shew asks, why are these technologies being developed? Transhumanists and the military. Framing this discussion as “helping our vets” makes it a noble cause, without drawing too much attention to the fact that they’ll be using them on the battlefield as well.

All of this comes back down and around to the idea of biases ingrained into social institutions. Our expectations of what a “normal functioning body” is gets imposed from the collective society, as a whole, a placed as restrictions and demands on the bodies of those whom we deem to be “malfunctioning.” As Shew says, “There’s such a pressure to get the prosthesis as if that solves all the problems of maintenance and body and infrastructure. And the pressure is for very expensive tech at that.”

So we are going to have to accept—in a rare instance where Robert Nozick is proven right about how property and personhood relate—that the answer is “You are damaging both property and person, because this person’s property is their person.” But this is true for reasons Nozick probably would not think to consider, and those same reasons put us on weirdly tricky grounds. There’s a lot, in Nozick, of the notion of property as equivalent to life and liberty, in the pursuance of rights, but those ideas don’t play out, here, in the same way as they do in conservative and libertarian ideologies.  Where those views would say that the pursuit of property is intimately tied to our worth as persons, in the realm of prosthetics our property is literally simultaneously our bodies, and if we don’t make that distinction, then, as Kirsten notes, we can fall into “money is speech” territory, very quickly, and we do not want that.

Because our goal is to be looking at quality of life, here—talking about the thing that allows a person to feel however they define “comfortable,” in the world. That is, the thing(s) that lets a person intersect with the world in the ways that they desire. And so, in damaging the property, you damage the person. This is all the more true if that person is entirely made of what we are used to thinking of as property.

And all of this is before we think about the fact implantable and bone-bonded tech will need maintenance. It will wear down and glitch out, and you will need to be able to access it, when it does.  This means that the range of ability for those with implantables? Sometimes it’s less than that of folks with more “traditional” prostheses. But because they’re inside, or more easily made to look like the “original” limb,  we observers are so much more likely to forget that there are crucial differences at play in the ownership and operation of these bodies.

There’s long been a fear that, the closer we get to being able to easily and cheaply modify humans, we’ll be more likely to think of humanity as “perfectable.” That the myth of progress—some idealized endpoint—will be so seductive as to become completely irresistible. We’ve seen this before, in the eugenics movement, and it’s reared its head in the transhumanist and H+ communities of the 20th and 21st centuries, as well. But there is the possibility that instead of demanding that there be some kind of universally-applicable “baseline,” we intently focused, instead, on recognizing the fact that just as different humans have different biochemical and metabolic needs, process, capabilities, preferences, and desires, different beings and entities which might be considered persons are drastically different than we, but no less persons?

Because human beings are different. Is there a general framework, a loosely-defined line around which we draw a conglomeration of traits, within which lives all that we mark out as “human”—a kind of species-wide butter zone? Of course. That’s what makes us a fucking species. But the kind of essentialist language and thinking towards which we tend, after that, is reductionist and dangerous. Our language choices matter, because connotative weight alters what people think and in what context, and, again, we have a habit of moving rapidly from talking about a generalized framework of humanness to talking about “The Right Kind Of Bodies,” and the “Right Kind Of Lifestyle.”

And so, again, again, again, we must address problems such as normalized expectations of “health” and “Ability.” Trying to give everyone access to what they might consider their “best” selves is a brilliant goal, sure, whatever, but by even forwarding the project, we run the risk of colouring an expectation of both what that “best” is and what we think it “Ought To” look like.

Some people need more protein, some people need less choline, some people need higher levels of phosphates, some people have echolocation, some can live to be 125, and every human population has different intestinal bacterial colonies from every other. When we combine all these variables, we will not necessarily find that each and every human being has the same molecular and atomic distribution in the same PPM/B ranges, nor will we necessarily find that our mixing and matching will ensure that everyone gets to be the best combination of everything. It would be fantastic if we could, but everything we’ve ever learned about our species says that “healthy human” is a constantly shifting target, and not a static one.

We are still at a place where the general public reacts with visceral aversion to technological advances and especially anything like an immediated technologically-augmented humanity, and this is at least in part because we still skirt the line of eugenics language, to this day. Because we talk about naturally occurring bio-physiological Facts as though they were in any way indicative of value, without our input. Because we’re still terrible at ethics, continually screwing up at 100mph, then looking back and going, “Oh. Should’ve factored that in. Oops.”

But let’s be clear, here: I am not a doctor. I’m not a physiologist or a molecular biologist. I could be wrong about how all of these things come together in the human body, and maybe there will be something more than a baseline, some set of all species-wide factors which, in the right configuration, say “Healthy Human.” But what I am is someone with a fairly detailed understanding of how language and perception affect people’s acceptance of possibilities, their reaction to new (or hauntingly-familiar-but-repackaged) ideas, and their long-term societal expectations and valuations of normalcy.

And so I’m not saying that we shouldn’t augment humanity, via either mediated or immediated means. I’m not saying that IBM’s Watson and Google’s DeepMind shouldn’t be tasked with the searching patient records and correlating data. But I’m also not saying that either of these is an unequivocal good. I’m saying that it’s actually shocking how much correlative capability is indicated by the achievements of both IBM and Google. I’m saying that we need to change the way we talk about and think about what it is we’re doing. We need to ask ourselves questions about informed patient consent, and the notions of opting into the use of data; about the assumptions we’re making in regards to the nature of what makes us humans, and the dangers of rampant, unconscious scientistic speciesism. Then, we can start to ask new questions about how to use these new tools we’ve developed.

With this new perspective, we can begin to imagine what would happen if we took Watson and DeepDream’s ability to put data into context—to turn around, in seconds, millions upon millions (billions? Trillions?) of permutations and combinations. And then we can ask them to work on tailoring genome-specific health solutions and individualized dietary plans. What if we asked these systems to catalogue literally everything we currently knew about every kind of disease presentation, in every ethnic and regional population, and the differentials for various types of people with different histories, risk factors, current statuses? We already have nanite delivery systems, so what if we used Google and IBM’s increasingly ridiculous complexity to figure out how to have those nanobots deliver a payload of perfectly-crafted medical remedies?

But this is fraught territory. If we step wrong, here, we are not simply going to miss an opportunity to develop new cures and devise interesting gadgets. No; to go astray, on this path, is to begin to see categories of people that “shouldn’t” be “allowed” to reproduce, or “to suffer.” A misapprehension of what we’re about, and why, is far fewer steps away from forced sterilization and medical murder than any of us would like to countenance. And so we need to move very carefully, indeed, always being aware of our biases, and remembering to ask those affected by our decisions what they need and what it’s like to be them. And remembering, when they provide us with their input, to believe them.