Dark Side of the Cure, Part Three: Those Left Behind

(This is Part Three of a series. Start with Parts One and Two, if you haven’t read them already)

Photo of five blind hikers on a mountain trail with a slope upward on one side and a steep dropoff on the other.

Photo Credit: Volker Corell

“Better never means better for everyone,” he said. “It always means worse, for some.”

So goes the Commander’s famous self-justification in Margaret Atwood’s The Handmaid’s Tale, as he tries to defend the brutal social and political order his party has created. 

Now his is a pretty extreme dystopian case, and maybe invoking The Handmaid’s Tale is a bridge too far for this post, but that quote keeps bouncing around my head as I write this series, and it seems appropriate.

Curing blindness will make the world better, right? That’s why we’re doing it, right? 

Well, maybe. I’ll leave the more ambiguous parts of that question for the next post, but first we have to consider the unambiguous part—those who will get no benefit from a cure for blindness, and those who will actually be harmed.

So who suffers from the quest to cure blindness? The blind.

I’m not talking about the ones who get a cure; I’m talking about the ones who don’t. No matter how many causes of blindness we can cure or prevent, there will always be others we can’t. Injury, genes, disease, stroke—some variation or combination of these will always exist and cause blindness for some. We may decrease the number of blind people, but the truth is, the fewer there are, the harder their lives will become.

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Let’s face it, for most of human history, life has not been kind to the blind. Prior to the 20th century, the two most common occupations for blind people were 1) begging and 2) nothing. There were some lucky few, fortunate enough to be born into wealthy families or supported by benevolent institutions, who could live well and developed their potential, but these were exceptions to the rule.

As a class, the blind still struggle, but their lot has gotten better. In the 19th century, Braille brought literacy to blind people in a way that had been impossible before, and in the 20th mobility aids like white canes and guide dogs opened up new possibilities for independent travel. In the same time period, a few forward-thinking schools for the blind shifted their approach from seclusion and protection (or seclusion and exploitation) to education and development.

But perhaps the greatest change has come through self-organization. In 1940, a group of blind people founded the National Federation of the Blind, the first education and advocacy group created and led exclusively by blind people, instead of just for them.

Nowadays there are three main organizations of the blind in the United States—the National Federation of the Blind, the American Council of the Blind, and the Blinded Veterans Association—and there are many more internationally. These organizations have different specific cultures and interests, but they all share one important feature: their leadership are all blind. 

These organizations understand the potential of blind people in a way that others never could and can advocate for their interests in a way that others never would.

The growth of the Organized Blind Movement, as it is called, was a turning point in the history of the blind. It allowed blind members of society to resist and transcend the paternalism and custodialism that characterized charities for the blind at their best, and the outright seclusion and exploitation that showed up at their worst.

This movement required a critical mass of blind people with the skill, knowledge, and motivation to form and administer alliances of their own. Blindness is a low-incidence condition, and many people (the blind included) do not regularly encounter blind people in their daily lives. Self-organization appeared in places where there were higher concentrations of blind people, and the effectiveness of these organizations has grown as more have heard about and been attracted to the movement.

It goes without saying that these organizations would be less effective if there were fewer blind people to join, run, and fund them, and fewer blind people advocating for their own interests.

So what lesson should we take from this? We can’t just call a halt to medical research so we can fill the ranks of our advocacy groups. We can’t deny people a cure based on the fear they will leave us behind.

But we can acknowledge the real cost that can accompany even good things, and we can listen to the concerns of those who foresee their own marginalization.

We cannot and should not stop the research, but we can strive to make sure that progress for some will not mean a return to the past for the rest—those who are, those who will remain, and those who will become blind

And maybe then, better can mean better for everyone.

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