Science and Medicine

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

Posted on by Eric Harvey

(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.

***

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.

Dark Side of the Cure, Part Two: Mixed Messages

Posted on by Eric Harvey

(This is Part Two in a series. If you haven’t read Part One already, you should)

 

A photo collage featuring images of blindfolded people from the How Eye See It campaign.

In the last post, I described how spending my time hoping for a cure crowded out and actually worked against me pursuing my other hopes and ambitions.

It doesn’t just work that way for people, though. 

The same thing happens on a societal level, when the quest to cure blindness takes place at the expense of those who are already blind. 

This might seem counterintuitive, so I’ll give an illustration. A few years ago, a non-profit organization launched a fundraising campaign called #HowEyeSeeIt, which has since become infamous in the blindness community.

 The goal of this campaign was to create a viral video sensation—kind of like the Ice Bucket Challenge, which raised so much money for ALS research. Instead of just doing a silly gag, participants were supposed to film themselves trying to do a basic task while blindfolded. Suggestions included making and eating lunch, doing household chores, or caring for your children.

But why would people watch the videos? Because it would create a spectacle, an amusing showcase of inept bumbling.

Blindfold yourself and make a mess of things—just like real blind people!

And why would people donate? Because participating would convince them of just how impossible it is to do anything without using their sight.

Blindfold yourself, and learn how unbearable it is to be blind!

Fortunately, the campaign never went viral, which is why you’ve probably never heard of it. Unfortunately, the other part does seem to be true. Blindfold simulations do make people more afraid of blindness and less confident in blind people.

A study by Dr. Arielle Silverman (herself blind) showed that participants in blindfold simulations actually leave with a lower opinion of blind people. From a blog post summarizing the research (the entire post is worth reading if you have time):

In one part of the study, after simulating blindness by having their eyes covered, participants believed people who are blind are less capable of work and independent living than did participants who simulated other impairments like amputation, or had no impairment.

In another part of the study, participants who were blindfolded said they would be less capable if they personally became blind and slower to adjust to their new world compared with study participants who weren’t blindfolded.

But isn’t it good that they’re learning what it’s like to be blind? Won’t it make them more considerate and sensitive to the needs of blind people? It would, if simulations really showed what it’s like to be blind. But they don’t. They only show what it is like to be blind with no education, skills, or experience.

It’s true that losing your sight can be scary and disorienting. But with education, skills training, and lifestyle adaptations, blind people can—and often do—live confident and fulfilled lives. The power of skills and experience cannot be communicated in a fifteen minute exercise, and participants leave with half the story.

The #HowEyeSeeIt campaign is just one example, of course, and most fundraising efforts aren’t quite so demeaning to the people they aim to help. But this one example reveals a fundamental question that looms over any effort to cure blindness: is it possible to respect the dignity and capability of people who are blind and still maintain the same urgency to find a cure?

For many blind people, thees two ideas exist in tension. Efforts to prevent or cure blindness are essentially good, but at the same time no cure is necessary to make life happy or worthwhile.

So go on, fundraisers, search for a cure. Just don’t frame it as the only hope for blind people. Don’t exploit sighted people’s fear of losing their sight. Don’t perpetuate false and frightening images of blindness. Don’t reinforce the low opinions and low expectations that have plagued the blind since time immemorial, because these burdens weigh much more heavily on the blind than blindness itself.

Low opinions and low expectations deny education when the students are apt and eager to learn.

They deny jobs when the skills are sufficient.

They deny a voice to those who are capable of understanding and advocating for themselves.

They deny the blind full inclusion and integration into society.

Prejudice and patronization are maladies that plague society, as real and as harsh as blindness itself. Any quest that seeks to cure blindness without also curing these is incomplete at best, destructive at worst. Let’s not pit these problems against each other. Let’s work on curing them both.

Dark Side of the Cure, Part One: Where is Hope?

Posted on by Eric Harvey

A photo of a lunare eclipse, including the dark side of the moon. See what I did there?

This is an exciting time in medical research. It seems like every time I turn around, a new headline heralds the imminent end of blindness. Stem cells, gene therapies, artificial retinas—with all the broad promise and breathtaking progress, surely there will soon be something to give blind people hope!

It’s an exciting time, all right, but I’m getting less and less excited about it.

I used to track everything, from active clinical trials all the way down to promising experiments on rats and mice. Recently, though, I’ve been losing track of what trial is in which phase, which ones are progressing and which are abandoned.

I’ve found myself, in general, less interested in a cure. And not just less interested—sometimes I feel outright squeamish about it.

Why? A cure for blindness seems like a cause without a downside. So much unnecessary pain and hardship could be prevented! Why wouldn’t I be interested?

Well, dear reader, keep going and I’ll tell you. This post is the first in a series, in which I discuss a number of my reservations about the prospect of a cure. The series isn’t meant to be balanced or give a full picture of my views; instead, I aim only to bring up a few points that are almost always left out of the conversation. The first post is personal, the middle two are societal, and the fourth gets almost philosophical.

***

Here is the personal: I no longer hope for a cure.

Don’t get me wrong. I’m not in despair. I haven’t gotten jaded because they always say the cure is “five years away,” just like they’ve said for the last fifteen or twenty years. What’s happened is, I’ve stopped placing my hope in the prospect of a cure at all, because there is plenty of hope in a life of blindness.

Hope is a slippery word. It always points to a brighter tomorrow, but beyond that it can mean a lot of things. There are different kinds of hope, different ways of imagining that brighter tomorrow and how it will get here.

There is a kind of hope that sits and waits and watches. It is a hope that sees help on the horizon, coming from outside at a time unknown to swoop in and make things better.

This is the hope for a cure.

But this is hope without control, and hope without agency.

I cannot control the pace of discovery, testing, or development. I can only watch and wait. And while I watch and wait, life will pass me by. Tracking the progress of research in expectation of a cure takes time and energy, and places my focus on something I can’t control. It distracts me from the life I am living now.

But there is another kind of hope: an active and engaged kind of hope, a hope that buckles down, digs in, and gets to work. A hope that says “with effort and determination I can get from where I am now to where I want to be.”

This kind of hope is described by psychologist C. R. Snyder as a cognitive process with three parts: goals, pathways, and agency.* This kind of hope defines a desirable end, plots a viable course to that end, and works hard to get there. This kind of hope finds new ways when the path is blocked, and continues to strive when the road is uncertain.

In case you hadn’t guessed, this is the kind of hope I prefer, and it has nothing to do with a cure. It is not hope that someone or something will swoop in and rescue me from my wretched existence, but the hope that I can make tomorrow a little better than today by my own careful planning and diligent effort.

It is hope that says life with out sight is not a tragedy.

I have come to see that life can be lived, and lived well, while blind. Those times before, when I would take a deep dive into research on retinal regeneration, came almost inevitably after I realized I could no longer do something the same way I used to, when I could see a bit better. What was I going to do? How could I keep on moving forward?

And yet, move forward I did, because the alternative was to fixate on the past, the things I had lost, and long for a solution that was out of reach and out of my control.

So I have chosen the second kind of hope, and I have chosen to focus my attention and energies on setting goals, finding ways to reach them, and putting in the work to get there.

And this has led, at least in part, to my squeamishness about a cure. It strikes in conversations, when someone mentions an article they saw, or a bit on the nightly news, and they express their joy at the hope this will bring to blind people. The hope that someday soon, my sight will be restored.

And I realize, with a sinking knot in my stomach, that the restoration of my sight is more important to them than it is to me.

Sure, it shows that they care. It shows that they want the best for me. But it also shows that they don’t know what is best for me. They talk as though blindness made life an inescapable misery and a cure were the only thing that could offer a life full of meaning and joy.

But I do not place my hope on a cure, and there are many, many like me—blind people who do not see blindness as an insurmountable obstacle. It is an inconvenience, a challenge, a target for prejudice and discrimination, but it can no more kill our hope for a good life than any other feature of our bodies or personalities.

There is already plenty of hope for blind people, with or without a cure.

* C. R. Snyder. The Psychology of Hope: You Can Get There From Here. Free Press, 1994.