Image via Dave Wild on Flickr

Pity is Not Progress

Why disabled people don’t need to be “fixed”

When I first read Zoltan Istvan’s recent essay on Motherboard, “In the Transhumanist Age, We Should Be Repairing Disabilities, Not Sidewalks,” I honestly thought it might be satire. In case you missed it, here’s the money line:

“In short, let the sidewalks remain in disrepair. Instead, in the transhumanist age we’re now in, let’s work to repair physically disabled human beings, and make them mobile and able-bodied again.”

Turns out Istvan means it — and unsurprisingly, his argument hasn’t gone over well with actual disabled people. We’re the ones affected by what he’s proposing, but our voices are (not coincidentally) completely absent from his piece. Emily Ladau brought the righteous anger in her direct rebuttal, and transhumanist B.J. Murphy gave well-intentioned compromise his best shot, but I want to return to Istvan’s original article and see if we can’t peel back some more layers of this onion.

I’m writing this for disabled people who wondered, even for a second, if he might be right about us.

I’m not interested in telling Istvan off — Ladau already did that just fine — or even changing his mind. He’s clearly dug in his heels on this issue, and frankly, anyone who founds a political party based on his own ideas probably isn’t looking for a broader perspective. I’m not writing this for him. I’m writing this for able-bodied people who liked the sound of him because they don’t know any better — and I’m writing this for disabled people who wondered, even for a second, if he might be right about us.

I don’t even want to get into how silly the dichotomy of “fixed sidewalks OR ‘fixed’ people” is. Plenty of commenters on Istvan’s article pointed out the obvious flaw: everyone, disabled or not or anyplace in between, benefits from better sidewalks. Ask any able-bodied parent pushing a stroller and carrying groceries whether they’d like the street leveled out, and you can bet they’d be on board. Nor will I give much time to the fact that Istvan exclusively equates disability with wheelchair use. There are over a billion disabled people in the world; not all of us use wheelchairs.

But here’s the bitter pill: on some level, Istvan is right. He’s right that disabled people can improve our lives by embracing technology — and in fact, many of us already do. For as much as Istvan loves to turn up his nose at wheelchairs, they’re probably the best example. No one’s born sitting in one. They’re an innovation that help some bodies do more and last longer. I wear braces on my feet with the same goals in mind, and after putting them on pretty much every day for 26 years, I do feel like they’re part of me. I’m only half joking when I tell my friends I want an Iron Man suit in my old age. So as much as I’d love to write Istvan off as a fringe weirdo with no good points to make, I can’t dismiss everything he says as offensive garbage. It’s not what he’s selling that’s the problem — it’s why.

Istvan’s essay isn’t actually about sidewalks or disabled people or even technology. It’s about power and pity.

For the uninitiated, Istvan’s perspective boils down to the medical model of disability: the idea, popular since the 19th century, that disabilities are medical conditions in need of treatments and cures. It defines disabled bodies as deficient and therefore “the root of the problem” (to borrow Istvan’s phrase) when it comes to disabled people’s diminished access and social position. It’s a close cousin of the oh-my-god-poor-you tragedy model, in which disability is a disadvantage to be either overcome (people love that) or succumbed to. Istvan says millions of Americans are “suffering from mobility issues.” “We could forever change the hardship of physical disability in America and worldwide.” Suffering, hardship — his understanding of disability clearly begins and ends here. He also likes tacking on the word “again” (“make them mobile and able-bodied again”) to imply that all of us knew the joy of able-bodied life before disability snatched it away — another medical model chestnut that’s just patently untrue.

This framework is the one we see everywhere, from those (in)famous “your excuse is invalid” memes to Glee letting Artie walk because it’s Christmas (twice) to Eddie-Redmayne-as-Stephen-Hawking walking over to pick up that pen as the herald trumpets played at the end of The Theory of Everything. All rely on the assumption that disability is categorically unfortunate, that everyone who has one wishes we didn’t, and that able-bodied people should feel lucky they got off easy.

The medical model is the comfortable one for most people because it lets our dominant cultural ideas of disability — namely, that it sucks and is to be avoided — reign unchallenged. It ensures the line between “us” and “them” looks strong, clear, and defined. (Istvan is invested in this line; when he says “imagine if we could give the physically disabled the real ability to be mobile again,” I know who he’s talking to, and it ain’t me.) And it keeps the power to say which bodies are “good” or “bad” right where we think it should be: with able-bodied people.

Istvan’s rhetoric only makes sense if you see disability as an undesirable problem.

Fortunately, this limited understanding of disability isn’t the only one out there. Since the 1980s and ‘90s, the social model — that disability comes from unequal access to education, healthcare, housing, employment, transportation, etc. rather than the body, and therefore that disabled bodies aren’t inherently “broken”— has emerged as its most popular competitor. To Istvan’s assertion that “exoskeleton and other types of technology would give [disabled people] the means to jump right back into the work force,” the social model would say “you know what else would do that? Accessibility. Give me reliable transit to my job, ramps and stairs with handrails to the door once I get there, solid pay and healthcare coverage, and a boss, coworkers, and HR department who know what to do with me, and then we’ll talk.” The social model is also our first clue that Istvan isn’t as altruistic or progressive as he’d have us believe.

Because here’s the thing: Istvan’s rhetoric only makes sense if you see disability as an undesirable problem. Frame it any other way — as a body type, an identity, or a social condition — and his shiny vision of the future starts to show its cracks.

Istvan lures us in using the the analogy of heart disease and how, with a quick reallocation of $300 million and a little patience, we could wipe out the #1 killer in America via robotic hearts. The knee-jerk reaction is “yes, please”; people aren’t big fans of heart disease. So by leading with this example, Istvan positions himself as an incisive, unconventional thinker who wants to use his powers for good — a nerd you can trust.

But then he barrels right on into “the case of disabled people getting better sidewalks,” not even pretending to care about the relationship between disease and disability, much less acknowledge that they’re not the same thing. It’s a clever maneuver because it makes the medical model look like a fact and doesn’t give you a chance to stop and think about the false equivalency he’s made.

My cerebral palsy isn’t actively killing me any more than getting older is. Is it tiring? Yes. Does it require me to get things done in weird ways? Sure. Is it inconvenient? Sometimes. But am I dying, or even unhealthy, because of it? Nope. Honestly, my genetically high cholesterol is far more likely to do me in than cerebral palsy ever is. (Sign me up for that robotic heart!) I get that it’s tempting to see disability as a living nightmare if you’re able-bodied, but the truth is more complicated than that. Mobility issues aren’t easy, but they also aren’t fatal. This is just my body.

He also loves to talk about disability in terms of “elimination” and “improvement.” To illustrate the problem there, I’ll offer an analogy of my own: what if he used that same language about being gay?

If you flinched a little at that comparison, here’s why: in the last decade or so, American public opinion has (however slowly) shifted away from pathologizing homosexuality and toward recognizing gay identity. Lest we forget, the American Psychiatric Association classified homosexuality as a mental illness until 1973. Conversion therapy, which President Obama recently condemned, began as a medical treatment before religious fanatics made it their crusade. So just because something starts out as a diagnosis doesn’t mean it will stay that way forever. Gayness has largely escaped the medical model; disability isn’t there yet. But as someone who (unlike Istvan) is actually disabled and gay, I can tell you that my cerebral palsy has more in common with my sexuality than with my cholesterol level. Both guide my social interactions, influence my politics, determine whether I feel safe or unsafe in a given situation, require a lot of explanation to some people, can prove frustrating (try being a disabled lesbian if you want to talk about unequal access), took a long time to not hate myself for, are hard-wired into my body and mind, give me community, and help make up my sense of self. In that light, Istvan’s suggestion that we “outright cure” disability — and his use of the word “eliminate” five times — looks a lot less progressive and a lot more frightening.

He’s made the classic mistake of equating “more equal” with “more like.”

“Improvement” is his go-to red herring because it makes transhumanism seem egalitarian. In a sorry-not-sorry interview with the International Business Times, he helpfully reminds us that “transhumanists believe everyone can be improved and should be improved if they want.”

How nice. But who gets to decide what “improved” means? Istvan? To him, the answer is so obvious it doesn’t even warrant mentioning: able-bodied people, naturally. But take a social model approach (or any other that doesn’t pathologize disability), and “improved” gets a lot harder to define. Istvan glosses over these complications because he doesn’t see anything wrong with the current power imbalance between able and disabled bodies — and in fact benefits from it. I know some folks roll their eyes at the word “privilege” these days, but able-bodied privilege is real, and it’s what ensures that he’ll be taken seriously, that he can speak this way without most people realizing there’s a problem, and that we continue to place a premium on those markers of “health” and “quality of life” that are understood as able-bodied territory.

Istvan’s made the classic mistake of equating “more equal” with “more like.” Returning to my previous example, marriage equality and workplace protection laws don’t turn queer people straight — they just give us opportunities straight people used to have all to themselves. The solution to homophobia is not “let’s just make everyone straight.” The solution to racism is not “let’s just make everyone white.” The solution to transphobia is not “let’s just make everyone cis.” The solution to sexism is not “let’s just make everyone a man.” And the solution to ableism, no matter how hard Istvan tries to sell it, is not “let’s just make everyone able-bodied.”

Embracing technology doesn’t make you forward-thinking. In Istvan’s vision, a normal, desirable, healthy body is still an able body; there’s nothing futuristic about that. In fact, it’s a lazy understanding of bodies in general — and disabled bodies in particular — because it doesn’t require anybody to change their minds. Able-bodied people get to go right on living while we get turned into a national problem.

Real compassion means doing the hard work and thinking beyond pathology.

Ultimately, the most toxic thing about Istvan’s approach is that it underestimates both disabled and able-bodied communities. I think most people know he’s taking it a bit far. If you point out “I can’t get to my car because this sidewalk has no curb cut,” even an able-bodied person who’s never had that problem will say “huh, that’s really unfair” — not “oh, just wait here for ten years while they develop robot pants.” Istvan does able-bodied people a disservice by reinforcing the idea that pity is compassion. He assumes we must be sad and that we want you to fix it. But real compassion means doing the hard work and thinking beyond pathology.

We don’t need you to show your love by feeling sorry for us. We don’t need you to give us exoskeletons and never fix that giant crack in the street. But we do need you to understand that just because we want access to all the same opportunities that you have doesn’t mean we want to be just like you.