I just finished John Scalzi’s Lock In, and I have an array of thoughts. I’ve decided to post it here instead of my (poor, under used) book tumblr for two reasons: 1) it is a very disability centric work and 2) a lot of my reflections on it are not just disability centric, but also neurodiversity related. NOTE: There will be spoilers in this post. If you wish to avoid spoilers, skip the read more/reading past the warning.
I really enjoy Scalzi’s work generally. It’s far from perfect, of course, but generally speaking he tries pretty hard to do good. In the past he’s done things like announce that he will not make appearances at fan conventions that do not have a strong anti-harassment policy, signal boosted and backed up via giving them guest posts on his popular blog when friends have reported sexual harassment, and talks bluntly about discrimination. Sure, he has flaws both structural and personal, but he has grown greatly over the years.
His writing is also, in the general rather than disability sense, pretty accessible on a whole for his genre. I have Audio books of his Old Man’s War universe of books, and Old Man’s War in particular is one of those books that I’d rec to someone who isn’t super familiar with but willing to get into reading Science Fiction. (Trust me when I say that Science Fiction is a genre with a LOT of not terribly accessible writing.)
The basic premise involves a bit of background, and summarizing it here is going to make it sound more complicated than it feels in the novel. In the universe of Lock In, a flu like epidemic strikes. At first it sees like any epidemic flu- high mortality rate, sure, but normal- until the second stage sets in: meningitis. And not just any meningitis- this one will put you in a coma and a certain percentage will wake up with their brain re-wired. Sometimes it’s minor, but for a decent chunk of the population they wake up to a form of Lock In Syndrome- their brains have changed so much that even though they are awake and conscious, they no longer have control of their bodies. Other survivors of the second stage of the illness, those with less extensive brain changes, have the ability via technological enhancement to allow the consciousness of those who are locked in to “borrow” their bodies. They are called Integrators.
After FLOTUS Haden contracts the locked in form, a ton of legislative dollars got dumped into a fund that would cover both care and treatment as well as quality of living research areas and the illness is named “Haden’s” after her last name. Neural nets are developed to allow those locked in access to a digital world. At some point an engineer develops robots (Threeps) that can be “ridden” by those locked in, and they are once again able to access the outside world.
The book takes place 20 years later. While there’s some bigotry towards Hadens, there has been a lot of pretty darn effective accommodations via the epic assistive device of the Threeps. Thanks to that, Hadens can do just about any job anyone able bodied could do- and some that they cannot. Additionally, the digital world of the Agora has allowed for the development of a Haden’s culture of its own, complete with identity-first language usage, and some younger folks end up rarely using a Threep preferring the online world and jobs that they are able to do from there. (In this universe, I’d be able to continue my social media contracting work even if I were a Haden.) Unfortunately, this also means that there are fiscal conservatives who want to cut nearly all money for Haden’s research, support, and development- and they do nearly just that. As the book starts there is about a week until the defunding legislation (The Abrams-Kettering Act) goes into effect.
Into this setting we follow Chris Shane, a new FBI agent- who happens to also be a PoC Haden- as his first week on the job kicks off with what looks like a murder. His new partner, Leslie Vann, is a former integrator and together they work in a special department that handles cases involving Hadens and Integrators. (For procedural purposes, any crime involving a Hadens or an on duty Integrator are considered inter-state, since the body of a Hadens could be anywhere while the Threep comits/is involved in crime. Ditto for an on duty Integrator.) The murder ends up becoming something much more, and we are treated to a pretty good tale that is something between corporate and procedural thriller. In the end I really really enjoyed it, but for me personally I had a hard time with some aspects up until the final few chapters. However, I will say that I already want to read it again just in the time that it’s taking me to write this post. I hope that Scalzi writes more in this universe, if only a short story set immediately afterwards- I want to know what was being said in those speeches!
You can read the first five chapters of Lock In on TOR’s Website. You can read a long short story that goes into details about the background in an interview narrative style on TOR’s website. It is called “Unlocked” and stylistically reminded me of the book World War Z. You can of course purchase it on Amazon, but please consider purchasing from a local book dealer or independent retailer- see details at the very end of the post.
From here out there are spoilers, read at your own risk.
I’ll start with the easiest part. While I totally and utterly believe that there would be efforts to defund care and assistive tech as well to privatize the Haden’s market, there exists current disability policy and legislation that has a certain prevalence of having a scale to accessing services based on income, and the way that the Abrams-Kettering thing is described doesn’t have an income scaling. Advertisements to allow low income folks access to virtual parts of the world are mentioned as an expectation, but on a private sector feasibility level not a legal or policy level. Low income folks who develop it are basically screwed past the initial care- which while very true to life, would be screwed in slightly more scaled ways. Additionally legislation that has major changes in service systems like this wouldn’t have an all at once implementation date the way it is depicted in the novel. It would have steps- certain things would be defunded first, states would need to submit individual plans on how they would manage the transition period, etc- that would probably stretch out over 5 years. But these quibbles are ones that are more policy-nerd-y and honestly the Abrams-Kittering Act is horrifyingly realistic depending on political climate. I also suspect that there will be a lot of Olmstead related complaints once access to Threeps becomes a private sector controlled- and thus out of low income price ranges- in this universe.
Very quickly, I want to note that limiting access to assistive tech- which is really what a Threep is- isn’t just a work of fiction, nor is people cutting funding further. You have to meet a pretty restrictive number of steps to qualify for medicaid/care pays for a power chair or scooter. To get stuff paid for ends up being a huge pain in the ass if you can’t private pay- be that through private sector insurance or out of pocket. Additionally some of the state plans in response to the ACA (Affordable Care Act aka “Obamacare”) have put some caps on spending in community settings that are pretty restrictive for those who need things from catheters to powerchairs to live. As I’ve talked about before (and I will note that the MAWD cut and work requirements were dropped) in my state there’s a push for people to move into nursing homes in how this cap structure is written up- while those who receive care in the community may see a $2000/year cap on medical equipment, receiving care in a nursing home effectively is uncapped. Anyone who tries to tell you this won’t push people living successfully with supports in the community into a nursing home is, and this is politely speaking, full of shit.
Now for the element that left me torn between “This is a good book to read” and being grumpy- until I got to the last chapter or so. There’s a villain, and he speaks something that brought me up short (Again if you don’t want to know who the villain is, you should have stopped by now as this contains his name) in this passage:
“All the more reason for a cure,” Buchold said.
“No,” Hubbard said. “Making people change because you can’t deal with who they are isn’t how it’s supposed to be done. What needs to be done is for people to pull their heads out of their asses. You say ‘cure.’ I hear ‘you’re not human enough.'” — John Scalzi, Lock In, page 99
That’s right, within the first 100 pages our villain, Hubbard, says something that you could lift right from this very blog, or from the mouths (literal and metaphorical) of any number of leaders in the disability rights movement, and especially in the Deaf community or in the Autistic Rights Movement.
Unlike those wise folks who wisely headed my spoiler warnings and the spoiler warnings of others, I tend to seek out spoilers. About a week ago I ran across a review in the actually Autistic tag on tumblr (which in addition to personal reasons I read for work) and clicked through. So I knew, at this page, that this was the villain of the story spouting this. And I knew he would say it. Thankfully I did not throw my book across the room, nor did I light it on fire. For one thing I really like Scalzi, and for another I had my hopes up since while he’s not vocal about it– he did spend his childhood being the poster child for Hadens and joined the FBI in part to get away from that– our PoV character isn’t exactly pro-cure so much as pro-acceptance.
There are three primary disability narratives you can go with in the Lock In universe. The first is pro-cure. This narrative is not a dominant one in the characters we meet, and in fact comes off as a bit naive though not villainous from the perspective of our PoV character. Pro-cure folks here rely heavily on rhetoric that I hear from parents in the real world where the line of though goes that people bully/don’t treat my child like humans being should be treated, so I want to make them indistinguishable from peers/put them in an autism only school/do anything I can to cure my kid to stop other people from being horrible to them. It’s goal is not to end discrimination so much as to remove individuals from being in the target group. (For which an argument could and should be made is connected to a pervasive victim-blaming trend in our culture, but this post is already over 1800 words long and I’m not nearly done yet.)
The second, and from the sympathetic characters and dominate narrative that we are exposed to, is pro-acceptance. In this one the goal is acceptance of and an end of discrimination against Hadens and their assistive tech– be it in Threep or Agora form. We are talking about community integration in this example. This was the view that both Shane (PoV character) and his family appear to believe in. Unlike the pro-acceptance branch of the disability rights and autistic rights movements in real life, there’s not a ton of opposition and it is at one point described as “establishment” type of stance. However a lot of the rhetoric that we in the real world would use for the pro-acceptance branch of disability activism would use gets pushed onto characters that are either sympathetic to/pro- the third narrative, or are pretending to be for it: Pro-Separatist.
Before I go on, it’s not anti-access or anti-civil rights thing in this context. It’s similar to a segment of the disability community that is concerned both that the Abled world will not reach the level of access that is needed AND, or rather and especially, that to aim for acceptance is to doom Disability culture and disabled lives to a demise. The idea is that separation from the Abled world is a solution, and that it could preserve the culture. The levels of separatism are variable from person to person. (This approach can also be seen in some ultra-orthodox jewish communities, though if you are interested in that application you should google.) Personally I disagree with this approach in real life, but am willing to work with people who hold it on common goals.
In Universe, the characters identified as Pro-separatist (or “pro-Haden’s separatism”) are taken advantage of by the villain. The most visible pro-separatist Cassandra Bell. The stances attributed to her in the section that goes over her biography are pretty in line with what you’d expect from this stance: She rejected both MIT and CalTech for school because they would require her to leave the Agora and use a Threep; She wants Hadens to stay on the Agora; and she wants interactions with non-Hadens to be on Hadens’ terms. All of these are on target. The issue is that some of the comments attributed to her (and used as a cover by the villain) in the book are ones that are also found in the pro-acceptance movement in real life. For example, noting that fixating on curing Hadens would destroy a people/nation/culture in the process parallels pretty well with comments from both segments of the Deaf community’s mixture of wariness and even outright rejection of cochlear implants, the pro-acceptance Down Syndrome community’s efforts to end eugenic abortion, and for the pro-acceptance Autistic community’s efforts to de-prioritize cure and causation research.
I think there’s also a useful parallel to look at between Ms. Bell and the post-ADA generation. Ms. Bell became a Haden in the womb. There was never a time that she wasn’t, as she puts it, “held within [herself],” and she was raised in the Agora by her mother. It gives her a different perspective on the relationship between Haden’s syndrome and the Hadens as people, one that isn’t influenced by a life before Hadens or by other people’s memories of a pre-Hadens child. Similarly, there are people who were born and grew up to the age of majority and beyond now who were not even conceived when the ADA was signed. They have lived their whole life in a world in which the ADA has existed, in which accommodations are a thing. Sure, people are still crappy about accommodations and the ADA isn’t well enforced. But living with that law always there does have an impact on how they are going to relate differently to their disabilities. I look forward to the day that I can say the same about a post-Olmstead generation.
Though her cause is a major thread in the book, we don’t– and Chris Shane doesn’t– meet Ms. Bell until page 293 of 334. We do receive her biography starting at page 163 though, followed by Shane’s thoughts about why they, the two most famous Hadens, had not yet met. This is the point where Shane identifies himself as “the establishment” in contrast to her “radical.” When they do meet, it is compared more to different circles or orbits. It is also in this meeting that she does what I’ve seen a lot of friends and colleagues do, something that years of patronizing treatment has ground into us: she calls Shane on a perceived overprotective or patronizing statement. She tells him not to confuse her with being a child, broken, or incapable- and that it is information, not protection that she needs. As someone who draws upon information to make sense of my world and to decrease my anxiety, this was important to me. Also important to me was that Shane’s reaction isn’t mollifying, and it isn’t denial- instead he just moves on to giving her the information that she asked for. This, unfortunately, feels rare, but also feels good to see depicted.
As their conversation moves on, Ms. Bell says what the reader should have picked up by now when asked her opinion of Hubbard, our villain:
“Intelligent. Ambitious. Able to speak passionately about Hadens when it is convenient and advantageous for him to do so, and when not, not.” — John Scalzi, Lock In, page 300
That is, that all Hubbard’s taking on of rhetoric that in Lock In’s universe is associated with a more separatist, and in our world a pro-acceptance, stance is not authentic. Hubbard easily uses whatever narrative is going to gain him more wealth– he may be a Haden, but he is less of a member of the community than he is an exploiter of it. He is an Affinity villain, targeting a group he might be classed with for personal financial gain.
This saves the book emotionally for me. That it is not his stated stance which is evil but the ways he has selfishly twisted it is a huge thing. WE are not evil, but any one of us could be. The book ends with Cassandra Bell on stage (or rather, her body and her speaker is) with Chris Shane’s father as well as the President of the Navajo Nation. (More on that in a moment.) The holder of the stances the villain perverted upholding her stances and moving forward to do good with the true intent of those beliefs. I just wish we could have seen her comment on the villain, or on the collaboration between Hadens, pro-acceptance folks, and one of the other peoples the villain targeted. I feel like that could have better mitigated the impact that having Hubbard twist rhetoric similar to our own might have on readers, but it is what it is.
Hubbard’s sort of self interest fixated approach to villainy extends beyond just how he acts towards other Hadens though. Buchold, who I am kind of thinking of as the token pro-cure character, learned what Hubbard was even before knowing that he was connected to the deaths. Within the space of the week, Hubbard went from coming just short of saying his work was genocidal to wanting to buy off Buchold’s company, stating that “Business is business.” And as awkward as it feels for me to agree with a pro-cure character on anything, I felt a little satisfaction as Buchold calls Hubbard every name in the book during a final conversation with Shane. (I also appreciated, though honestly it rang as unrealistic compared to my real life experiences, that he apologizes for trying to drag an unwilling Shane into his pro- vs anti-cure argument with Hubbard earlier in the book.)
The final thing I want to talk about is the Navajo thread in this book. Hubbard targeted members of the Navajo nation for experimental procedures as part of his plot, and particular importance– indeed the instigator for the entire book and eventual downfall of the villain– is John Sani. Sani had an intellectual disability as a result of the meningitis stage of Haden’s, and was targeted because of being intellectually disabled, neurologically capable of being used as an integrator, and a Navajo nation member who wouldn’t have been registered in the US databases of those who had experienced Haden’s. It would have been easy to let him stay a victim, but he’s also a hero– you could argue the most heroic of our heros– in this story.
When he realized that Hubbard might be using him to do something bad, and that he was unable to keep it from happening, he killed himself in order to make sure someone would look into what was happening to him. Sani gave his life to make sure that Hubbard couldn’t continue to do evil and it is his death that gets the metaphorical ball rolling. To discount him by treating him as a victim only would be wrong– and instead he is given a chance to tell his story via a recovered video, to have his voice listened to. Sadly, that isn’t always the case for people like him in real life because too few people actually listen. Here, people did, and it saved the day. Janis, his sister, sums it up well:
“You’re not sorry Johnny is dead. You were going to kill someone today. You’re sorry you got caught. But you did get caught. You got caught because Johnny stopped you from getting away with what you were doing. He made trouble for you, just like he said. My brother was slow but he could figure things out if he took enough time. He figured you out. And now look at you. My brother is ten of you.” — John Scalzi, Lock In, page 329
There are other things to be said about this book. There are probably better looks at this book from a disability perspective that could be made. I’m really curious as to what members of the Navajo and other indigenous groups in the US think of the book. I am curious to see what people write about it in terms of internet privacy and digital identity. But those are not areas where my voice is needed and/or would be useful.
Note: The links to specific books are to Amazon.com, but please consider ordering them from local book sellers and/or a place like indiebound which sources from local book sellers. There’s a lot of reasons for this ranging from local jobs and local money (which means more opportunities potentially for people to access local and fair competitive employment) to worker’s and writer’s rights (let me google this for you) to not buy from amazon. That said, I do regularly buy from Amazon myself because of cognitive, financial, and sometimes agoraphobia related reasons, and don’t blame anyone who does use them.