In this shared blog post, Dr. Joshua Miele, who will deliver this year's annual Longmore lecture, looks at stories behind the disability expertise we seek to celebrate at the Institute. His desire to innovate comes as a creative impulse for sure. But his efforts also arise from the need for true dialog between disabled and nondisabled innovators. Swirling in here are genuine impulses to help. Yet too much effort goes into imagining what *those people* might want or need rather than considering how we might all benefit by looking to the work of someone like Miele.-Director Catherine Kudlick, Paul K. Longmore Institute on Disability
For almost thirty years, I’ve been designing and implementing a wide variety of tools intended to give blind people better access to the information they need to do the things they want to do. Information accessibility is one of the most significant barriers facing blind people. From printed text and graphics to interactive point-and-click interfaces, information is almost always represented visually, and it is almost always the primary thing a blind person needs to negotiate in order to achieve his or her desired ends.
I don’t do this out of the kindness of my heart or for the money — I do it because I have to, and because I need the job done right. I’m a blind scientist who has had to do a lot of his own informational negotiation over the years, and I know from experience that the quality of one’s accessibility tools has a direct impact on the quality of one’s life.
I didn’t set out to be an accessible technology researcher. At first I thought I’d be some kind of physicist, but in the course of my studies I found myself having to put almost as much effort into developing my own tools and techniques for accessing information as into my studies themselves. I realized that good access tools needed to be designed by someone who truly understood how and why they would be used. I’m sure this is some kind of ancient product design wisdom that’s taken for granted in most mainstream product development efforts. However, in the case of products for blind people it is frequently abbreviated or overlooked entirely. Many sighted inventors of accessibility tools unconsciously substitute a combination of mythology, prejudice, and pity for market research. They come up with an idea that they think would be useful for blind people and leap into development mode, often without consulting even one informed blind consumer.
No one is more familiar with this phenomenon than Bill Gerrey. An engineer at The Smith-Kettlewell Eye Research Institute where I have worked in one capacity or another for over ten years, he is one of my most valued blind mentors. In his more than four decades at S-K, he has developed all kinds of accessible tools for electrical engineering, wayfinding, mobility, home maintenance and repair, ham radio and more. He has been a subject and collaborator in practically every accessibility experiment ever done at Smith-Kettlewell. For years he was the founder and Editor in Chief of a ground-breaking DIY Electronics magazine for blind people, and remains the irreverent and unvarnished (except where it suits him to be otherwise) institutional memory of the organization. He loves gadgets, the older the better. Both his home and lab are warehouses for equipment that was manufactured and thrown away more than seventy years ago, was lovingly rescued shortly thereafter, and which has been piled up awaiting its hour of need for decades. He has cylinder players, army field telephones, vibrotactile stimulators, oscilloscopes, and microwave ovens stashed in every imaginable location. Any of these could get swept up into Bill’s next prototype.
Bill is famous in a modest way. He has been featured in many newspaper and magazine articles, and has appeared on TV, radio, and podcasts. Sometimes it’s for projects he has been involved with; other times, people write about him simply because he’s interesting and fun to talk to. I’m pretty sure that his secret to success is that reporters simply like chatting with him. He’s a font of history, opinion, old jokes, wisdom, and irritability — mostly in good measure.
I started at S-K as a summer intern while getting my Ph.D. at Berkeley. I was in awe of Bill Gerrey — a living legend in the blind community. They squeezed me into his electronics lab by piling the stacks of plastic project boxes and ancient shortwave radio chassiss even higher to yield a few square feet of bench space for my computer and keyboard. My perch was right outside the door to Bill’s inner office so he had lots of opportunity to mentor me.
The biggest benefit of sitting there was that I got to listen to all of Bill’s phone calls. Because he conducted so much of his business on the phone, I was educated in all sorts of unanticipated aspects of accessibility engineering research. I learned the business from the inside out, so to speak. While the sausage of the accessibility world is nothing compared to politics, I did confront some distasteful truths that summer.
In particular, I noted a recurring type of disturbing phone conversation. Once or twice a week Bill would field a call from a complete stranger sent by one of his adoring connections, or possibly self-propelled through sheer doggedness or religion. It would start with Bill calmly, if tiredly, saying something like, “That’s interesting, but blind people don’t really need that,” or “Actually, that already exists,” or “Have you talked to any blind people about this?” The conversation would generally turn into a long discussion about the fundamentals of Braille reading, how screen readers work, cane technique, or some other incredibly basic aspect of the routine conduct of blind life.
It turns out that there is a type of person — usually a retired sighted guy — who has invented something that’s going to really help blind people. Unfortunately, guys like this don’t usually know any blind people, and they don’t generally have any idea what needs doing in the blind world, technologically or otherwise. They seem to be inspired mostly by pity, which is a powerful motivator, but poor preparation for addressing real problems. They are reasonably well-meaning, but they generally show little interest in learning anything about the field or doing any kind of market research. You see, they’ve already invented the thing that blind people need, and they just need a little help — usually with obtaining funding — to get it into the hands of the needy blind.
One guy had invented a special telephone that would call 911 if you gave it a hard bump or knocked it off the table. He was convinced that it would be perfect for blind people because if you needed help you could just… knock it off the table. I guess he thought blind people couldn’t dial 911. Or maybe he just figured we were really good at knocking things off tables. Either way, Bill had a hell of a time convincing him that it was not only a thing that blind people didn’t need, but would also constitute a serious problem for responders in the event of an earthquake. He did not even mention how offensive the idea was.
Throughout these conversations Bill was always polite and friendly, but firm and instructive. The calls always seemed to drain him. It was as if the thankless task of dashing the hopes of these poor old guys was exhausting physical work. Inevitably, the calls would conclude with Bill offering to send some information, make a connection, or help in some other minimally committal but magnanimous follow up.
When the call would finally end, Bill would put the phone down and lean back in his chair. He’d emit a long sigh followed by a laugh. “That guy has it all figured out,” Bill would say. He’s going to invent a new Braille system with three extra dots and it’s going to solve everything.”
Although I have mellowed with age, I have to admit that I have never suffered fools gladly, and greatly admired Bill’s ability to remain calm under extreme conditions. My accidental audits of Bill’s involuntary re-education classes would inevitably get me riled up. I told bill once after a particularly bad one that I wasn’t sure if I felt more sorry for him, or more sorry for them. Bill got a great big laugh out of that. We both knew that it was a toss-up as to who was getting the shorter end of the stick: Bill for having to try to educate resentful people who thought he was simply unappreciative of their genius, or the misguided geniuses themselves for intellectually leaping without first looking at the problem from the proper perspective.
If you want to design a really good sail boat, you don’t want some physicist land lubber who just understands fluid dynamics and mechanical advantage to do the job. You want someone who, in addition to knowing about those things, has a lot of experience sailing. the physicist who would be a shipwright should become a sailor. After a few dedicated years on the water he will have a better grasp of how to build a better boat. If he isn’t a complete misanthrope, in the process, he will have also acquired a community of fellow seafarers — an invaluable source of advice and constructive criticism. Now he’s ready to build his boat. With a little luck and good design sense, this combination of expertise, experience, and user feedback could, ultimately, lead to the development of a truly superior sailboat.
Bill Gerrey’s callers have neglected to take their sailing lessons or even to connect with a community of sailors. They already know what it’s like to be blind because they’ve tried to find the bathroom in the dark a few times. They have seen “The Miracle Worker,” and maybe talked to a blind person on the bus once or twice. In their minds, a lack of vision is synonymous with a lack of knowledge or ability. They presume that any invention they can come up with will naturally be an improvement for the lives of the blind. Market research complete!
Unfortunately, the problems that uninformed sighted inventors assume are critical are often complete non-issues for real blind people. Bill’s callers mistakenly assume that blind people are inexpert at being blind, and that we haven’t developed skills or techniques for dealing with the most obvious aspects of blind life. These self-perceived innovators are oblivious to the fact that in order to help us, they need, first, to ask us for help and be prepared to listen.
Now that I’m a big fancy scientist I field calls from these sighted inventors, too. Not as often, of course, because I’m not as famous or as friendly, but inexorably, they trickle in. We probably all get them from time to time, but those of us in accessibility research are particularly prone. There seems to be an endless supply of well-intended, ignorant sighted inventors who have come up with just the thing to keep Blind Timmy from inadvertently stepping in puddles, and they’re really bummed when their contribution to blindkind is so badly misunderstood and under-appreciated. From an informed perspective, I find so many of these inventions are unwanted, unnecessary, and, dare I say, kind of stupid, but it is incumbent on my colleagues and me to at least try to instruct these would-be product developers gently. The worst part is not their inevitably bruised feelings, it is the waste of their efforts. If only they would take the time to learn and understand, they might make a significant contribution. If only they would learn about blind people — our methods and our needs — before deciding what we need, they might come up with something truly useful. What a shame to waste so much enthusiasm on so many useless endeavors.
Recently I’ve been thinking about these guys again, and how cool it would be if blind people could help them. Wouldn’t it be great if we could somehow tap this resource? What if we could get to them before they invent their superfluous head-mounted escalator detectors? What if we could give them some kind of course or training materials that would educate them enough to at least start asking the right questions? How wonderful it would be if we could tell someone about the seventy-one ways we have already tried and failed to invent full-page refreshable tactile displays before they re-invented the twenty-seventh. If we could only direct their technical creativity before it goes into yet another irrelevant laser cane or face identifier, we might be able to help them actually help us.