My address to the 20th Retina International World Congress, “Breaking the Barriers of Blindness”

Breaking the Barriers of Blindness

Address delivered to the 20th Retina International World Congress by Jonathan Mosen, 11 February 2018

 

What are the barriers that result from blindness?

Most people consider blindness to be a significant disability. Some surveys have shown that people fear blindness even more than cancer and AIDS, both conditions which can be fatal. But it’s true what they say, forcing oneself to quantify and articulate a problem is often the best way to break it down and put it in perspective.

In my view, there are two fundamental barriers that can make blindness problematic. That may surprise you. You might be thinking of a dozen things right off the top of your head that are frustrating about blindness, ranging from not being able to drive a car, to identifying the baked beans from the peaches. But I contend that those are symptoms of the two barriers of blindness. One is the information barrier. Blindness is fundamentally an information disability. I use the term “information” broadly. Information can be the printed word, data that helps you determine who someone is or where something is located, anything at all that tells you about the world around you. Sight is such a dominant sense. You can process a lot of information quickly with sight. Most people have it, and naturally, they become highly dependent on it. So, our society has been structured to cater to the vast, sight-dependent majority. After all, if the can of baked beans had a button on it that spoke the name of the product, or for that matter a Braille label, blindness would pose no barrier to my identifying it.

Being blind doesn’t stop me from driving a car, but the way cars are built, and our road system that is dependent on obtaining information visually, is the barrier. A blind man, Mark Riccobono, proved this when he drove a car almost a decade ago. The car was built to provide him with information in a non-visual form. This was no self-driving vehicle. This was a blind man, making judgments about navigating his vehicle, because the information was being conveyed to him in a manner he could use.

That leads me to the second barrier of blindness, attitude. Some people who are highly sight dependent find it difficult to imagine how someone deprived of sight, either since birth or later in life, can possibly function. Discrimination doesn’t have to be malicious for it to be discrimination. We know that people have been oppressed and wars fought over people thinking that because someone’s skin is a different colour, or their belief system is different from theirs, they are inferior. Humans often fear what is beyond their personal realm of experience.

These two factors, information barriers and attitudinal barriers, are inextricably linked. The good news is, both barriers of blindness can be broken, and slowly but surely, they are being broken. When given a fair chance and decent training, blind people can, and do, live fulfilling lives, advancing in almost every career imaginable, contributing to their communities, raising families and feeling content with their lot.

It’s a fool-hardy person who tries to predict where technology is headed. Even 12 years ago, few people would have predicted that Apple would disrupt the smartphone industry, dethrone Nokia, and usher in an era of touch-based smartphone devices. Even fewer people would have predicted that a robust user paradigm would be developed facilitating a blind person engaging with a touch screen, that seemingly most visual and inaccessible of user interfaces. But we can take an educated guess at where we’re headed based on what history teaches us, and the current state of the tech industry.

Most of the key technological advances in blind people’s information access have been initiated by blind people ourselves, or in close partnership with inventors who were willing to truly listen. Louis Braille invented his raised dot system for the blind, then had to defend it against the school for the blind where he was a pupil and later taught. They said blind people should read embossed print, thinking more about the comfort zone of the teachers, rather than the students’ ability to process information efficiently.

A few decades ago, a man not long blinded because of a car accident decided that it was the beginning of a new chapter for him, not the end of a purposeful life. An education in computers ultimately led him to founding his own company. The man was ted Henter, the company was Henter-Joyce, and the software was called JAWS. Ultimately, another blind software developer, Glen Gordon, led the JAWS for Windows project, making access to Windows truly viable when many people were concerned that the graphical environment of Windows might mean the end of the progress we’d made under DOS.

A chance meeting with a blind man on a plane led the brilliant Ray Kurzweil to develop the first reading machine in the world. It cost over $50,000 and was the size of a washing machine. Gradually, it reduced in size and price, and found a mainstream purpose, the document scanner now commonplace in many offices. Now, technology far superior to that original huge, expensive device is an app on my iPhone, with me wherever I need to read a document.

We’ve benefited from dedicated blindness technology doing impressive things for a few decades now. But the blindness market is small, and that means that the cost of research and development, as well as the cost of manufacture, must be spread across a small user base. For that reason, dedicated blindness technology has been expensive, creating a digital divide.

All major mainstream computer and smartphone manufacturers now accept that providing a non-visual means of accessing their devices is the right thing to do. iOS, Android, ChromeOS, Windows and MacOS all have solutions built in that allow a blind person to walk up to any device and use it. Some operating systems are made even more useful by third-party screen readers for even greater productivity and functionality.

What we’re seeing now is a convergence between the things sighted people want and blind people need, and that has the potential to put more useful technology in the hands of more blind people.

Let me point out just a few mainstream technological trends, and then look at their impact on presenting information in a non-visual way.

For years, the printed word was squiggles on a page that a blind person couldn’t decipher. As a child, it meant that I had to pester my older, sighted siblings to read the newspaper to me. But then, those squiggles became zeros and ones, stored in computer systems. That change meant that the zeros and ones could be converted back to squiggles for the squiggle dependent, but those numbers could also be converted to dots for the dot dependent, or to sound so they could be read with a digital voice. I’m reading my notes using a device called a refreshable Braille display. Still using Louis Braille’s code, I can connect this device to my iPhone or PC and read in Braille what’s on the screen. Not only can I read my speech notes. iBooks and Kindle mean I can read the latest best seller while it’s still a best seller, at the same time as everyone else.

The devices we use are getting smaller, and more powerful. We’re moving quickly to an always-connected world where most devices in our homes, from lightbulbs to appliances, will be online.  The roll-out of 5G networks, capable of transmitting masses of data faster than many current home connections, will ensure that even some of the clothes we wear and the items on our person can send and receive large volumes of data.

I believe we are starting to see the beginning of a transition away from touch to the next big user paradigm, voice.

The ability for computers to parse what we’re saying and better understand our vocal nuances and linguistic idiosyncrasies is thank to what’s often called artificial intelligence.

This broad term captures so much that’s exciting. Machines can now verbalise a lot about the world around us.

I’m truly excited about this move towards increasingly intuitive voice-controlled interfaces. When it works, it’s just easier for anyone, blind or sighted, to talk to their stuff. Most blind people become blind as seniors, often in conjunction with the erosion of other capabilities. Learning alternative skills in that situation is sometimes too daunting in conjunction with everything else going on. If voice control is the norm, it changes the game. We’re now seeing a future on the horizon where our entire homes, as well as huge repositories of information, can be accessed with straightforward, conversational commands, placing the power of emerging technologies in the hands of the non-geek.

Recognising visual elements like people and pictures? We’re increasingly moving to an era where sight isn’t necessary for that either. Visit Facebook while running screen reading software for blind people, and it will give you a verbal description of the photos your friends are uploading. My understanding is that, once the privacy implications are carefully worked through, Facebook will often be able to tell you exactly who is in the photo.

When thumbing through my iPhone’s photos, I can be sure I’m uploading the correct one, because I can teach the phone about the names of people in my life, and I can also get a description that, while not always perfect, offers remarkable detail.

Apps already available, such as the free Seeing AI from Microsoft which was the brainchild of a blind developer who works for them, will describe people and scenes. There are numerous barcode readers and other devices for identifying objects.

Many people, blind or not, rely on GPS. I still get a thrill being able to get a directionally-challenged person home. The specialised blindness apps simply provide more information in an auditory form. For example, a sighted person can look around them and see the businesses they are passing, whereas it’s useful for a blind person to be told this. Since the data exists anyway, it’s no problem for it to be spoken for a blind person. Progress is being made on methods of in-door navigation as well.

In the United States, a service called Aira uses smart glasses to connect a blind person to a call centre, so a trained representative can help with everything from quickly identifying the shampoo and conditioner, all the way to walking through a crowded airport and getting to your gate.

And then of course, there is the big one, self-driving cars. This is an area where technological progress is likely to be far ahead of attitudinal change for some time to come. How soon will people be willing to surrender control of the wheel to a machine making millions of intelligent judgements every second. When that day comes, and I believe it will, I can imagine us moving to a model where vehicles are simply a utility we summon when needed, not a device we own. We’ll somehow indicate our need to be transported, the closest free vehicle will pull up beside us, and we’ll head off, no vision required.

So, we’re seeing a convergence of many factors. The wants of the mainstream market are coalescing with the needs of the blindness market. Big data, big pipes of bandwidth and small devices will make visual access to information one valid, compelling option, but only one option. Data of all kinds will be made available in multiple ways, including in a completely auditory manner.

The optimist in me says that there will also be a convergence between the crashing down of the information access barrier and the other barrier of blindness, attitude. As more people use voice-controlled devices and hear their devices talking back, they’ll realise, through personal experience, that sight isn’t the only means of accessing most of the world’s information. At that point, perhaps then we will start to see a long-overdue reduction in the dire unemployment statistics among the blind population.

I have never been able to see. But I know enough to know that none of the technology I’ve talked about will replace seeing the look on the face of someone you love, particularly if you once had sight and then lost it. You can’t truly verbalise a sunset, or the Mona Lisa. I know this, as someone who has never seen even a spec of light, but whose blindness comes with the bonus gift of progressive hearing loss absolutely free. I know that no description will do justice to the majesty of Beethoven, or the sense of rapture when listening to Sgt Pepper. But when my hearing started to deteriorate, I was faced with a tough choice. Do I retreat? Do I conclude my best days are behind me? Or do I try to be brave and realise that there is much beauty, much to be grateful for, in the now. I’ll continue to monitor research on hearing, just as many here will monitor research on vision. And if I could have my full hearing back tomorrow, I would take out a second mortgage on our house if that’s what it took. I say this because I empathise with how some who have become blind later in life feel about what has happened. But while we can encourage and hope for medical breakthroughs, putting our lives on hold would truly be a tragedy. To not use the opportunities before us, to not embrace the abundance of opportunity, is to squander the most precious of all resources we will ever have, the one life we have to live. The power and obligation exists within all of us, blind and sighted, to understand the fundamental barriers of blindness and how many means we now have of breaking them down. There has never been a better time in all history to be a blind person, and I, for one, look forward to waking every morning to see what comes next.