You are an accessibility evangelist, a writer, and for a long time you’ve been a very progressive proponent of universal access and inclusive design. You’re the chief content officer at Ophthalmic Edge Patients (OE Patients) which is an online resource of practical information and empowering advice for a full and successful life with vision loss. Before that you were director of accessible technology at the Lighthouse Center for Vision Loss.
Q. You have played such an important role in making technology accessible to all. What brought you to this field?
My experience with accessibility began when I joined The Lighthouse in 2001. I had been diagnosed with Stargardt disease — an early onset form of macular degeneration and dystrophy — in my very early thirties. It’s a progressive type of vision loss, very similar to age-related macular degeneration. My vision started to change right away, but very slowly. It’s a very merciful change, I had an opportunity to adjust as I was moving through it.
For the first 10 years I could tell things were changing, but it didn’t affect the way I did things.
In 2001, through an incredibly auspicious business association, I had the opportunity to join the Lighthouse as a fundraiser. My background prior to that had been in sales in the apparel industry, but I had always wanted to go into fundraising as a second career — regardless of the vision problems — because I thought it would be a kinder place for a woman to age. That worked out beautifully.
When I arrived at the Lighthouse, I had no need for anything special but I thought whatever needs I had in the future would be satisfied. The best of everything would be available to me.
After two years I started to need some assistive technology, as it was called then. I was a fundraiser and I used a database called Razor’s Edge, which is one of the biggest, and it was designed in an unfriendly way — it had tiny boxes, dark background colors with dark letters, it was very difficult to use. As my vision started to change I had difficulty with that, so now I did need some assistance.
I was very excited to explore all the things that the Lighthouse could do for me, because I had been talking about them anyway as a fundraiser; but then I saw what was really available to me, and how inaccessible mainstream technology was, as well as third-party programs like Razor’s Edge. Not even Windows was friendly in terms of accessibility. They had an accessible technology team, and they used the word “accessible”, but that wasn’t anywhere in the program. You could make text maybe three times larger, but not 30.
I started to see what a challenge this was. Transitioning into vision loss wasn’t going to be easy in terms of technology, even at the Lighthouse. I was very disappointed, and I was always challenging the technology group: why couldn’t Microsoft make this program work for me? What they had was cutting edge assistive technology, and I told them we needed to make it better.
To start using this technology was a struggle — it wasn’t well supported or understood, even at the Lighthouse. It was always a fight, but I did learn to use the program that ran on my PC — and I had a love-hate relationship with it. However, it did what it was supposed to do, which was to keep me working; and for that I respected it, but I kept thinking there had to be a better way.
I connected with Microsoft, I started to talk to people and getting involved, but I continued using that program and getting nowhere. During my earliest relationship with the word “accessible”, it was usually preceded by the word “not”.
They would tell me: “the market’s too small”. “But something accessible would be better for everyone”; “Well, it’s cost prohibitive to make it accessible”. Everyone would say that — technology companies, the people at the Lighthouse. I started to think I was going to fail, that this technology and I were never going to get along, and without technology I wasn’t going to be able to work.
The other thing I started to realize was that everybody around me, both people who had a visual impairment and my friends who didn’t but were moving into their 40s and 50s, were struggling with technology. The big thing in those days was the BlackBerry, which I never used because it was never accessible to me. And I didn’t understand that, because just a boost in the tech would have made it work.
It wasn’t that accessible for an average user either!
All kinds of people from my peer group would struggle to read their BlackBerrys. That made no sense to me. I also didn’t understand why it didn’t just read it to you. That’s not something that everyone embraces, but they’re not ridiculous requests. The piece of equipment I loved at that time, and which I learned to use even though it wasn’t accessible, was the iPod. That was a testament to my ability to work around the problem. I wanted an iPod very much, and I couldn’t even read the big ones — then somebody gave me an iPod Nano, and I learned to use it by clicking through it.
At the end of 2006 I was the director of Major Gifts, and I was quite successful in fundraising because I knew how to sell, and because I was living the experience first hand. I was with our then CEO talking to her about the year-end numbers, which were going very well. By that point I had had nine bosses in five years, and she told me there was going to be a new one.
That’s when I decided to move on to something else. I was really interested in technology, and at the same time felt very left behind by it. In fundraising everyone talked about how technology was leveling the playing field, but it wasn’t true. My boss asked if I could do that there, in the Lighthouse, and I said yes.
That was my entry into technology, and they really gave me an opportunity to learn because with almost everything before that I was just guessing. I didn’t really know much about it, and I didn’t have a lot of experience beyond my own. The one thing I had going for me was that I do not accept the status quo very well, so the way things were were not going to work for me. I wanted something better, and people were very receptive to my thoughts and ideas. The world started to come together for me.
In early 2007 I joined the technology team, and began to learn and work with them. I started reaching out to Microsoft, IBM, etc., building relationships. I was very excited about what the developers were thinking and doing, and where they wanted to go. We spoke the same language. I was very excited about the possibilities.
In 2007 they took out an iPod Nano with spoken menus. I was the first one to get it, and it was life-changing. I felt like I could see the menu, I could hear everything. It was the same as seeing the screen.
It was a very uplifting moment, and it made me realize that it really matters how you feel about the technology you’re using.
Q. Do you feel that physical aspect made a difference? Were the fact that you could spin that wheel, and the connection between the touch and the hearing important?
I did think so at the time. I was indoctrinated into the conventional wisdom that said people with vision loss need tactile features. I’m sitting at a gorgeous iMac with a very small keyboard, but before it was thought we needed big keyboards.
With this iPod I was able to move from the visual to the audible, and it felt seamless to me. Also, I had a very strong desire to have what I thought was the “hot” technology — the things everyone had. There was something similar to the iPod made the for visually impaired, and they were big clunky things with giant buttons, and they looked almost like a child’s toy. It wasn’t something you could slip into your pocket, and I was very turned off to that.
The iPhone had launched by that point, and there were rumors that they were going to make it accessible, but not even I believed it. No one thought blind people could use a flat screen, things needed to have texture. The iPhone came out and I was, again, nervous that I was going to fail. I had friends who weren’t visually impaired that were having trouble even making a phone call because it was a big curve, a very new experience. But I just had to try it, and they were amazingly supportive of me at the Apple store I went to.
They were excited that I wanted learn how to use it, and they made a special accommodation for me to have one-to-one training, and lots of other people were training too. In the beginning people thought it was too difficult, but now everybody’s using it and it’s become second nature. It’s beautifully designed and it shows us that with technology everything is possible. That phone opened up not a world, but many. It took the place of a lot of tools we needed to carry around, like a recorder, a magnifier, etc.
It also did something that’s beyond value — it made us feel normal again. We were not on the outside of this amazing happening, now we were in it too. In the beginning I was very excited, because I could talk about my iPhone like everyone else — and mine was even more interesting because it spoke.
Q. What’s your definition of accesible technology? From what you’re saying it’s much more than being able to access it. It touches on the connection, the emotion that’s associated with it, the sense of belonging and being included — which is broader than just access.
“Accessibility” is a great word, I love it. It applies to everything, not just to people with vision loss or disabilities. It’s important for everything and everyone, at all ages. Accessibility means easy to deal with, easy to use; not being frustrated and confused. It’s not just about helping people with certain types of disabilities, it cuts to usability for everyone. I wrote a blog at The Lighthouse for a few years, and my byline on it was: “Accessible technology is better for everyone”.
Many accessible things are changing the lives of people like me. Dictation, for example, wasn’t an easy thing to come by before it was in a mobile device. It wasn’t a big product for people with vision loss either, and it wasn’t user-friendly.
At the Lighthouse, in addition to doing technology, I ran the information and resource service for many years. There we took calls from around the country and occasionally from other countries, and people would tell us about a family member, for example, who was losing their sight to macular degeneration, glaucoma, etc. They asked for techniques and for recommendations on technology, and they were ahead of their time, because they asked, for example, for a computer which they could talk and give orders to.
I call that “the less you know, the more you expect” syndrome. Everybody thought, like I did, that this technology must have been available, yet we could only get pieces of it. Right now, however, all of those things that comprised those expectations are now available in mobile devices.
Q. A few years ago you said “I’m 52 years old and I want to be like the other kids” This ties back to your passion for gadgets and technology. Could you explain better what you meant?
At the Lighthouse I was surrounded by professionals in the field of vision rehabilitation: they were wonderful, dedicated people, great colleagues, and I was involved in a very outspoken way. I’m not afraid to express my opinion, even if it’s not in line with others.
I would go once a week, and we’d have rounds where someone presented a case, we’d talk about their progress, what they were using, what was recommended and how they were adjusting to it. Often times they would talk about children, and even though I was not affected as a child, I could relate to them — they didn’t want to use the clunky technology because it made them feel completely different from their peers in school. However, I always felt they were talking about it like it was the child’s problem, and not the technology.
I feel the same way as that kid feels — I don’t want to use the clunky, strange tools, I want to use the cool stuff that everyone else is using. And why shouldn’t I? If people without vision loss couldn’t have the technology they use every day, they would be very miserable. I want the same stuff, and there’s nothing wrong with the kid that wants it too. There was something wrong with the technology.
Q. You have a very unique view about the term “disability”, what it means, what’s it loaded with and how it’s generally been used until now.
“Disability” is a term which I’ve never identified with. Another great boss at the Lighthouse told me that some people identify with the term and accept that label, even though I don’t, and that both approaches are okay.
I never stopped working, and I always counsel people not to give up. To stay in the game, because giving that up means losing something big. I’ve always managed to continue on, I took lemons and made lemonade. I thought that if I was going to work, I might as well do something that will work for my situation.
On a number of occasions I’ve had to fill out forms that ask “Are you disabled?”, and I don’t do it. “Disabled” to me is someone who’s unable to work. It says the person is broken in some way. You don’t start a job, a project or a task by saying talking about what’s wrong with you, what doesn’t work well. Why not focus on the possibilities, the good things, the abilities? Let’s focus on what’s right.
Technically I do have a disability, and I do like getting seats up front in concerts, but it’s not something that I get any kind of real benefit from. People think having a disability gets us benefits, and it’s not like that, but that’s a different conversation. The point is each person is in charge of how they want to be identified. We can decide if these are words you want to have applied to us.
How do those words make you feel? Do you relate to them? Is that the way you want to be considered, and the way you want to consider yourself? We’re all able to say how we want to be identified.
That connects to the subject of access. It’s not enough just giving access to people, you need to tap into their emotions and state of mind, and it all comes together.
Q. Is there anything happening out there that’s particularly exciting, in your opinion, with technology and accessibility?
We’re still at the early stages of what will happen in terms of accessibility. From my perspective, in the end we’re all going to be using the same things, and that will blur the lines that differentiate people. I love that the aging population is driving all this development and awareness, and I see great things coming.
Not feeling excluded is extremely important. Accessible technology has shown to have healing effects on people with vision loss, because it makes them feel included. It gives back things that had been lost, and that’s an incredible feeling.
Big Tech is a priority for everybody. Everyone’s talking and caring about it. Not in a completely equal way, they all seem to have their own approach, but that’s going to change too. The spirit of accessibility is going to become much more unified and people will see that it can’t really be restricted.
Microsoft, for example, has done a great job. They’ve come a long way and they are really in the game of accessibility today, in a committed and authentic way. However, their accessibility support phone line — which is an amazing thing — is called Disability Answer Desk, so when I encourage people to call the number, they say “Oh, but I don’t really have a disability”. The term is restricting. They have a good philosophy, but it shouldn’t be restricted — everybody needs help. I have family members who are brilliant, and they still get all twisted over technology, and I want it to be good for everyone. Every single company should have a place where anyone can call and get accessibility support.
I use only one piece of assistive technology today, my iPhone — and I’m sure I could wean myself off of that too. But everything I use is mainstream, beautiful, enviable technology. There are amazing things coming, all the companies are developing for people with vision loss. They’re all building apps. Google has an app coming called Look out, which obviously will be for Android, but I’m sure they’ll make it for iPhone too.
Everybody’s crossing over. Amazon is now allowing to have iTunes in the Echo. Everybody is mixing, we all want everyone to benefit from everything. The virtual assistants are amazing and I have all three of them on my desk. I talk to them all the time [laughs]. I just ask the questions, and it’s amazing what kind of information I get.
I use it in the kitchen for cooking, timing, to get recipes. I use it for everything. That is something everybody wants. It’s not just the speaker, it’s the technology. This category is growing faster, among everyone, than a smartphone. For Christmas everyone’s getting another speaker, because one is not enough. That’s a great thing.
The other thing is — you actually sent me an article about mapping of interiors last week. That’s very exciting too, because now IBM is going to do a consumer app. That’s moving in a whole other direction, I didn’t even dream of this one. It’s voice recognized, and it’s supposed to be out this year. There’s so much stuff coming, and these companies are developing products for people with vision loss that will be better for everyone.