Meet Sile: Learn how she takes advantage of technology.
Sile O’Modhrain is an Associates Professor of Performing Arts Technology at the University of Michigan – Ann Arbor. “Her research focus is on haptics-touch and gesture-and its relationship to music performance and on the development of new interfaces for technology-enhanced instruments that extend the boundaries of musical expression.”
Sile was born in Ireland. She earned her Ph.D in computer based music theory at Stanford University. She then worked as a researcher and faculty member at MIT. She also worked for BBC Radio as an audio engineer and program producer. Sile has Leber’s congentital amaurosis, which leaves her with “perception of light, but no real useful vision”. I recently sat down and spoke with Sile in Ann Arbor, Michigan.
She explained to me what her condition is:
“It looks like retinitis pigmentosa because what happens, your central optic nerve doesn’t develop properly. Therefore your retina isn’t being used. The process of refreshing chemicals in the retina atrophies and eventually your retina looks like the retina of someone with retinitis pigmentosa because the pigment starts to go away. I’m often drawn in for medical students because it’s a real trip. They think it’s RP and they forget to ask one or two questions which would reveal that it isn’t. They often use me as a mean person for exams.
It’s not primary retinal disease, it’s just a malfunction of the development of the optic nerve. It turns out to be one of the conditions that they can correct with genetic therapy now. If they find the condition soon enough they can correct it in a child. Before they’re two or three they can completely reverse the condition. That’s been fairly recent.”
How do you read your e-mail? How does that all work? JAWS (Screen Reading Software?
Sile: The equivalent actually, “Window Eyes”, but it’s the same thing. They’re a competitor to JAWS. I think they’re slightly losing their ranks right now.
Mike Walsh: JAWS is winning?
Sile: JAWS has a bigger user base because it was put on computers for government employees. It’s got a greater foothold. I think at the moment they’re slightly ahead in terms of what they can do. Then sometimes Window Eyes will leap frog it…
Mike: It’s a technology battle, that’s good.
Sile: The web is still becoming a bit of a pain now though because of dynamic content, neither of them seem to deal with very well. Mike: What do you mean by dynamic content?
Sile: If you have a scrolling feed on a webpage or an applet sitting within a frame, the screen readers just collapse. It’s like, “Can’t cope.”
Mike Walsh:Do you use [Facebook]?
Sile: I use Facebook. I tend to use it through apps, that removes a lot of that content.
Mike: What is your profession?
Sile: I design and build new digital musical instruments. I started out in sound engineering. I worked for the BBC for some time. I then applied for a scholarship and ended up coming to the states to get my PhD. I went to the Computer Music Center at Stanford, it’s called CCRMA. Then I worked for MIT. Still working between computers and music. That’s really the area I’ve stayed in.
My current appointment here is half in the school of music and half in the school of information, which is where human-computer interaction happens. Really I suppose I do human-computer interaction but with a flavor of music.
I brought up a recent grant three professors from Western Michigan won from the National Institute of Health to research and redevelop the white cane. Sile shared with me about a techy cane she has:
Sile: I have a cane that was developed by some people in France about eight or nine years ago that has a distance sensor. It’s good for sensing things which are not on the ground like obstacles that are at head height or that are far away. It gives you vibra tactile feedback about whether it thinks there’s an obstacle in the path that you’re about to travel.
Mike Walsh: Does it vibrate your hand?
Sile: It does. The problem is that there’s so much information coming through the cane anyway about things like surfaces, but those subtle tactile cues that you’re picking up from the ground are actually really useful. This masks them a bit and confuses them. You’re superimposing two forms of tactile feedback (including vibration). It’s useful but it definitely hides, it masks some useful information. That’s not to say somebody couldn’t find a way around it
Mike: Are senses heightened… If you lose one sense (sight) is your hearing heightened?
Sile: I think you use it differently. I used to have this argument with my training manager when I worked at BBC. He said, “No, if I look at the profile of your hearing,” … it’s the same as everybody else’s. We came to the conclusion… that I use different cues in the environment and I’m attuned to different signals, The interesting thing about touch is that’s slightly different. If you’re a braille reader or actually if you happen to play a musical instrument, even though you’re not blind, your tactile acuity doesn’t degrade at the same speed as that of people in general. It’s like a use it or lose it thing.
[People who] play musical instruments or people who read braille, or… other very fine motor tasks, keep their tactile acuity much later in life than [other] people in general. That’s an interesting thing. It doesn’t seem to work with hearing. I guess there’s some basic physiological stuff that happens as you grow older with hearing.
Mike: What are some challenges that you’ve come across and how have you overcome them?
Sile: The kind of things that are challenging and will continue to be challenging are really stupid things. I happened to hear, on the BBC a fragment of a program. It was a blind guy, he’d lost his sight, and he was talking about the fact that he was in London and he had an early appointment then he had an appointment later in the day. He’s like, “I’ll just hang out.” Then it suddenly occurred to him that hanging out was actually quite hard. Anytime you wander around, [you] amble into shops, go and get a coffee, or pick up a newspaper. As a blind person unless you know an area really well, it’s not something you can easily do. That’s challenging, silly little things like.
Mike: Whenever you’re in a rush is it more challenging?
Sile: Yeah, random people getting in the way… not being able to drive in Michigan in winter is a real pain, and the fact that when you move from place to place support systems are quite different.
Mike: Yeah, all the places you’ve been, different kinds of support systems I bet.
Sile: Here in Michigan it’s funny. What I do when I arrive in a new place when I’m living there is to have some training on the routes that I’m going to need most immediately. I’m reasonably quick at picking things up so I don’t need a huge amount of training. Michigan really was mean about it. We spent ages while I was sitting here — waiting to be trained — deciding how much training they were going to give me. That was a whole process that delayed me. I’m like, “C’mon guys, I’m actually here working already”.
When that period had passed, let’s say it was like six months that they eventually settled on. I got a form in the letter from Rick Snyder telling me that I had been rehabilitated. I still haven’t decided how I feel about that but I would like to go and say, “What does it mean to have a lifelong disability and be told you’ve been rehabilitated?” That’s weird. That was kind of insulting.
Mike Walsh: What opinions do you have about ADA (Americans with Disabilities Act)? You’re from Ireland, right?
Sile: I think ADA has been a really good thing. It came in America before it did in Europe. It forced Europe to comply. In the end I think Europe does a better job of compliance and of enforcing compliance, than America does, but if it hadn’t been for the ADA, the whole thing would never have really gotten organized. There wouldn’t be guidelines. There wouldn’t have been lots of things we now take for granted like buses that will come down so the wheelchairs can get on.. Simple things that are just so part of our lives now came out of ADA. Of course it’s a pain. It’s a pain for the average small business that needs to put in an accessible toilet or whatever and has to incur all that expense.
I think it’s more so in Europe. Europe is better at protecting disabled people, for instance in the workplace. To make sure you really do earn the same as your colleagues. I think that’s less so here. It’s much less even and you’ll still find that visually-impaired people in a comparable position still generally earn less than their sighted counterparts. That’s not really true in Europe because it can’t be. Europe is much more — in most countries, I won’t say all countries — but in Western Europe in particular is much better at taking that off the table altogether, it’s not even an option. If you can deliver the job then you need to get paid the same.
I don’t think it’s the case here… there’s some really cool things in Japan. I guess they had a lot of blind veterans who came back after the Second World War. There put a lot of really interesting things in place. The whole subway system has tactile markings running throughout it, where you can get on this little tactile road and it brings you through a subway station, then it brings you to the ticket office and then the escalator.
Then if you keep following it you’ll end up at the platform right where a train will stop and the door will open. It’s so fast. It’s as mindless, probably, as commuting for somebody who can see. Well, I can’t imagine that would ever happen in America, and it probably is only true in places like Tokyo and major cities.
Mike: … that came out of servicemen being blind?
Sile: I think that’s what motivated it but they really did adapt. Every sidewalk in this city, pretty much, has these yellow things going along it.
Mike: The bumps?
Sile: Yeah, they’re like little tracks. If you stay on them, they pretty much guarantee you’ll be safe [from] any overhanging stuff… Japanese people really understand that you can’t put things on those lines…
Mike: … going back to music… Do you have any artists that you like that are flying under the radar? Who are your favorites? Do you have a favorite style?
Sile: I’ve gotten back into some Motown and related kind of stuff… Muscle Shoals (movie), it’s about this amazing studio that existed because of one person in Alabama. It started, I think in the ’50s, I could be wrong there. It ran right up and through the ’80s. The guy who run it whose name now escapes me, he seemed to have an unerring talent for hits, almost regardless of genre. It was amazing, you have to see it…. That’s gotten me back into a bit of a Motown groove and related things…. Then of course I listen to classical music and jazz and all sorts of stuff… I was listening to Django Reinhardt today. I listened to Josh Bell’s recording of the Bach partitas for a while.
Mike: I know it’s a loaded question.
Sile: For a musician it’s like, “Oh my God!”
Mike: [What are] favorite places you’ve been. What do you enjoy when you travel?
Sile: I like walking or running. I started doing some long distance running quite recently with guides. I’ve done a couple of city races like 10Ks and one half marathon. What I like about that is you get to a city and it’s closed down and you get to run through the streets of the city, like Madrid… You get this real feel for the city that’s impossible to get in any other way because it’s just so visceral…. and you just run in the roads. In Barcelona we ran… through really amazing parts of the city. That’s really cool. A very tangible feel of the city.
I grew up on a farm, and I’ve rode horses all my life, so I’ve done a couple of horseback riding holidays. One of those was in Banff National Park. That was amazing. Banff in Canada, it’s where it’s a big skiing resort area in winter, but the national park there is stunning. I’ve done horseback riding holidays, where there’s one that is a week long and you ride into the park. There are no vehicles really allowed in the park so everything you bring in with you has to be packed in on mules. You ride from one lodge to another and stay overnight. It’s just really amazing way to explore country that is hard for visually-impaired people to access by foot, even though you could hike. Even hikers would say they wouldn’t cover the distance that you could cover on a horse.
Mike: Any places on your radar?
Sile: I want to go to Australia and New Zealand. I’ve been promising to do that for years. I’ve got friends and relatives out there and I just need to do it. Slightly scared of the fact that there are so many poisonous animals in Australia…. I love the west coast, I lived near San Francisco for six years…. in Palo Alto… That is probably one of my favorite places… Have you gotten into tandem biking yet?
Mike: No, not yet… funny you say that. Actually I rented a bike to go across the Golden Gate Bridge a couple of weeks ago, a week ago. I was like, “This is going to be one of the last times, perhaps if things keep going …”
Sile: No you should go tandem biking. The thing about tandems is if you’re fit and you’ve got a good bike you can outpace anyone on a tandem because you’ve got all that power.
Mike Walsh: You have to be in the back, essentially?
Sile: Oh yeah. You’re the engine basically.
Mike:Yeah, it’s hard. I’ve been a biker my whole life.
Sile: You’re going to have to give up your power.
Mike: [Giving up] Driving has been fine. It’s like, “Oh, get a ride. Public transportation, fine.” Driving was, as you adjust, it’s so slow. By the time I stopped driving I was relieved. I was like, “Okay, I can’t do it.” You’re relieved. Then you forget, “Oh, it was nice to be able to go somewhere.”
Sile: That is annoying, when you go back to things that are frustrating, like you want to go down the store for something. Oh man, that’s not easy.
Mike: You have to plan your life.
Sile: Well yeah, you have to be more organized. If you forget something you just forget it. Amazon and things like that are great. You can buy a lot of stuff online now, that’s useful.
Mike: What are some habits that you have? (that can help other visually impaired people)
Sile: … figure out anywhere locally [that] delivers. It’s not that you’d have to use the service all the time but it’s great to know as a backup. I’ve used it here in the winter. In the summer I can walk to the grocery store. If friends are around I can ask them if they’re going and I’ll go. It’s great to be able to ask friends but you should really have a plan B. You might necessarily not always want to be bothering people.
It’s really nice if people can help you but it’s always good to have a way of doing at least the basics things on your own. It might be harder. Of course it’s great if somebody came come along with a car and you just go in and get your shopping, it’s brilliant, it’s so quick. At least if nobody can come or if somebody was going to bring you and they can’t come at the last minute you’re not completely stuck. That’s always good, having a plan B. It is a lot about thinking differently, I think, being organized. You’ve traveled on your own for this trip, right?… Have you had to use assist at all in airports?
Mike: I’ve used them, yeah. I have my cane and people are very receptive, like, “Go in this line.” There are times when I feel like I’m taking advantage but then it is a little bit slower for me. I’m helping other people by using this line and going in the shorter line.
Sile: Eventually if you lose your sight completely and you turn up at an airport on your own what you’ll have to do is use the wheelchair service. You’ll have a hard time convincing them not to put you in a wheelchair. That is really annoying. They will do a meet and assist. You just have to think about your airport trip. You’re not going to go to a shop in the airport. You’d probably have to beg them to get [you] food. It’s not automatic that they think of these things. Being ready to hold your own, and when you’re traveling always bringing food, even Clif bars or something so that you never get left. The annoying thing since all of the 9/11 stuff is not having water…
If I could do anything it’s to make TSA give disabled people back water if they take the water from them. They don’t realize how hard it is, you can’t just go and get it if you’re in a wheelchair or left stranded. That happened to me the other day. I was four, nearly five hours by the time my flight was delayed and I had no water. Just because the flight was bumpy the cart didn’t get to me and I never got it. I was so thirsty by the time I got home. Things like that, you can get caught in traps like that.
Mike: Interesting. You mentioned Palo Alto and [I was] just out there. It’s fascinating, now everything can be delivered to you, everything. There’s a service for smoothie delivery now.
Sile: Probably not here… We don’t even have Uber here…
Mike: Uber, how awesome [is it] when you’re in San Francisco or somewhere that has Uber. How much do you love being able to press a button, Uber, Lyft.
Sile: Oh my God, it’s brilliant. I lived in Belfast and then I lived here and I haven’t had Uber really. It wasn’t invented when I lived in Boston or San Francisco.
Mike: Is Uber something that you are able to see? You talked about shadows. Are you able to work with apps?
Sile: Yeah, I use VoiceOver on my phone… One annoyance that has cropped up is … Uber probably isn’t a problem but when apps update, sometimes the later version of an app … I don’t actually have Uber on here at the moment … the later version isn’t accessible. That just happened with the Weather Channel app. It used to be accessible, now it isn’t. What really did it for me is I bought a Nest, because I wanted to have access to the thermostat through my phone. That worked fine but then they upgraded and now I can’t use it anymore. I now have a useless thermostat. They upgraded it right in the middle of winter when it was minus 30, 40 degrees here. It was so frustrating. There are little gaps in technology, and I think especially as visually impaired people start to rely more on their phones as the interface to their stuff, the Internet of Things — which is great, but somebody has got to start taking care of accessibility. It’s not just that your app is inaccessible, it’s parts of your house are no longer accessible. I can’t change my heating, I can’t do all these vital things in the real world that need to get done because somebody didn’t take care of the software issue.
Mike: Your phone… is that braille on your phone?
Sile: This is a useful thing. SpeedDots is the name of the company. They make these overlays for iPads, iPhones. It’s the keyboard, you see at the bottom? … Then just some random places on the phone where keys tend to pop up. The back and forward key, that’s the center of the thing. This tends to be the anchor points that are typically on the screen. They make a guess and give you the most critical ones. Even these dots for the keyboard are just amazing.
Mike: Who do you think I should go talk to?
Sile: You should go talk to Mike May. Mike May had quite a lot of his vision restored after surgery. He had detached retina, I think? Maybe it was glaucoma, I can’t actually actually remember off hand what his condition was but he lost his sight when he was about three.
I met him very shortly after he had surgery and he was starting to get some vision back. It would be really interesting to go and talk him. That would be one person. He has this company called Sendero that do GPS navigation systems that are on a lot of the accessible devices. He’s a really interesting guy…
I don’t know their name, but find the doctor who did that work on Lebers and did the earliest genetic interventions, just to talk about the whole process. What it’s like to discover something that eradicates a condition, can reverse a condition. That developed the gene therapy for lebers. It was in the new about two years ago I think. Lebers or LCA is the short form of the condition, the initials. They would be two good people… What about Erik Weihenmayer?
Mike Walsh: The climber?
Mike: He’s on my list.
Sile: Go get him… It would be interesting to find a blind person who is running a small business… any visually-impaired people who are just out there [at] that level trying to survive. I saw a chef somewhere who’s blind. He doesn’t run a restaurant, I think he runs a business. Some people have told me about this, they’ve been like, “How the heck does he do that?” Of course I cook but I couldn’t cook on that scale.
Things that are slightly below people’s radar that they would never imagine a blind person would do. I’m sure there are people out there doing it. Andrea Bocelli breeds horsing as well as singing… there are a lot of blind individuals who have horses and ride horses that hold tournaments. There’s a dressage event in the Olympics and all that kind of stuff. Somebody actually running a small business like a stables or something like that is cool too, out on a farm. Somebody living in Alaska, how the heck do they survive?
Mike Walsh:Blind person, Alaska, I don’t know how how you live in Alaska.
Sile: It costs … I was thinking of switching to JAWS but I have to be able to spend a thousand dollars to do it. I just don’t have that in my research budget right now. It’s frustrating because you pick up an iPhone, or an iPad — any “i” stuff, even the Apple TV. It comes with VoiceOver on it. You don’t have to do anything else, costs you nothing extra. It is accessible out of the box. You can switch over VoiceOver on Apple TV and navigate that whole infrastructure. Why on my PC do I have to pay an extra thousand dollars to have that functionality? That’s what’s really frustrating.
Mike: Props to Apple, right?
Sile: Well Apple was late into the accessibility game but when they go into it they said, “Right, we’re going to do it properly. We’re going to do it from the ground up, it’s not going to be an add-on.”
Mike: That’s good, they do everything very well.
Sile: It did take them an awfully long … And actually VoiceOver is good on mobile devices but still on desktop platform it leaves a lot to be desired. You can’t open Word or Adobe, it won’t read anything by a third party vendors. It’s still a heck of a lot better.
Mike: That’s good. Do you have any questions for me? I’m kind of through.
Sile: What are the things that you’ve noticed that have been the most surprising, in this journey that you’re on?
Mike: First thing is just people are incredibly nice. They go out of their way, or they’re just really interested in what I’m doing. They want to help out. I do everything through Facebook and Twitter so I’m fascinated how people will post it on their page. “Hey, I met this guy. You should help him out.” It’s heartwarming. It’s also embarrassing and everything. People send me messages saying it’s fun to see someone doing that. That’s a little overwhelming. People are … The human race, it’s incredible. Things that I’ve found out … I don’t know. I appreciate the vision I have. I’ve found that people adjust, and I’ve noticed that in myself.
Sile: You know, there are some really good people that I’d love to find out more about the kind of things they do. There are a bunch of teenage blind nerds who design accessible games, for instance. They seem like they’re shaping social media, and even technology, to make it work the way they need. Of course we all did it on the way up, what are they doing now?
… There’s an organization called BlindGamers.org. Find a blind kid who’s going to college to study computer science, who’s really active on social media, and go and interview them. Find out how their view of the world is different from even yours and definitely mine. When I was going to college all of us were stepping into the unknown. Now I feel that with social media that’s not the case, there’s this whole network that people have even before they go to college. …How has that changed, how is that whole vibe working out for visually-impaired people that are approaching this through technology.
Mike Walsh: You talk about your condition being rare. A network, like Facebook Groups allow your condition to be less rare, essentially. You can meet people, talk to people on there [with a shared condition]. I posted something before I came here and I’ve gotten probably eight responses already. It makes it less rare, essentially… That’s great.
Sile: I’m running a workshop in June, maybe in July, in London as part of the conference on new interfaces for musical expression, which happens every year. This year there’s a group in London that work with blind musicians and they’ve asked me to run a workshop on accessible technologies, or how you get into this field. It’s really interesting that when you don’t have time to update your skills and look at the current tools you don’t realize how fast the field has moved forward. I just have been realizing actually there’s quite a lot I can do now that I couldn’t even do five years ago in my own field. Not because anybody has really made an effort to make things accessible but just because they are, and they weren’t then. Because technology has improved, because Apple has built in accessibility to its computers so that anything that runs on a computer has to conform to that. By accident lots more things are more accessible than were before.
Mike: Are iMacs accessible? Do you think any Macbook they make is accessible?
Sile: In theory, yeah. It’s not as functional as something like the windows platforms but you can do e-mail and the web, and you can do basic sound processing using GarageBand and stuff like that. Even that five years ago was hard…
The best way to do accessibility is to have it on the back of a tool that everybody is buying. Of course there’s VoiceOver and then the phone, it gets some input from every phone that’s sold because part of the cost of that phone is covering all of the stuff that goes into it. You distribute the cost of making it accessible across all the users, not just across the disabled users.
Anything, any tool, any adaptive thing. If you can piggyback… on a general thing it’s going to be much more successful. It will be more regularly updated. Whereas if you go for specialist tools they may be more appropriate but they’re going to have all the downsides of having limited support. It’s a trade off, all of it’s a trade off. At the moment the trade off is going towards general accessibility and these things which is good I think.
At the end of the conversation I learned about a crowdsourcing app called “Tap Tap See” that describes pictures to help visually impaired people. Sile demonstrated by taking a picture of me and my friend, Soodeh, who was with me.
Sile: There it is. Right, okay. Let me take a picture of you.
Sile: Don’t worry, it won’t stay on my phone. Wait, hopefully somebody’s awake.
Mike: What’s going on here?
Sile: I’m waiting for a response… Sometimes it can be lucky, just sometimes … if they’re not awake, we can try forever.
Mike: Nobody likes my picture?
Machine: Picture one in men’s black ski jacket.
Sile: Men’s black ski jacket. I guess I just got your jacket. Sorry. I’ll try again. Let’s see if I can get it.
Machine: Take picture. Picture two in progress.
Sile: I have no idea what the viewfinder is seeing, so …
Machine: Picture 2 is woman sitting and smiling, holding a phone.
Sile: Yeah, someone out there got a picture and sent me back a description. It’s completely anonymous so they don’t know it’s me. It’s crowdsourced…. What’s really funny is, sometimes, say I have something I can’t remember, it’s a shirt or something… I take the same picture a couple of times and I get completely different descriptions, depending on who sends it back. I can always tell if it’s a guy or a woman, because a woman will tell you … say it’s a shirt. They’ll say, “It’s a blue shirt with a floral pattern on a such and such background.” A guy might say, “Shirt with flowers.”
What a great conversation! If you read through all of this… THANK YOU. I hope you learned something. A HUGE thank you goes out to Soodeh Montazeri for setting this up!
Follow My Journey