The Awesome Molly Watt!

Molly Watt and Uni

How one woman uses her creativity to bring awareness to Usher syndrome.

I recently had the pleasure of speaking on a panel at Harvard Medical School with Molly Watt at the Usher Syndrome Coalition Family Conference. – (Full Transcript)

Molly created a video on YouTube – “Have you?”. She talks about her challenges of having Usher syndrome type 2. She shares how she strategizes the most basic daily activities. I was introduced to Unis, her guide dog and constant companion.

Molly, who recently turned 20, is already an accomplished person. In addition to speaking at Harvard, she has spoken at the House of Commons and many schools. She has also written a children’s book. Moeeover, she is very active on social media through Facebook and Twitter. She shares her experiences and engages with others. Molly states “Social Media is priceless to those with Usher syndrome – isolation can be the worse symptom of the condition.”

Molly is determined to raise awareness about Usher syndrome. Back home in England, she answered my questions.

Mike Walsh: What is your vision like today? How do you explain it to someone with normal vision?

Molly-Jane Watt: Depending who I talk to… to one person I’ll say i have tunnel vision in one eye while the other eye has ‘pretty much had it’. But to another, I’ll go on to explain I have blind spots, and very impaired central vision due to my secondary eye condition as well.

I get flashing lights, blobs and floaters on a daily basis, and depending on how I’ve woken up that morning and how the weather is, depends how impaired my vision is on the day…

So in general, I get good and bad days

Molly Watt and UniMW: Your website [] was the first place ANYWHERE to give me the term “glare blindness” to explain my sensitivity to light. Do you wear hats and shades a lot?

MJW: My eyes are incredibly sensitive to light changes and bright light = glare blindness, so yes I wear sunglasses a lot

MW: How does different kind of weather affect your vision?

MJW: Bright days are difficult, dark days are difficult… it’s difficult to find an actual day that is suitable… but with glasses and Unis i cope just fine.

MW: When you were looking at colleges, you kept getting rejected because schools didn’t know how to deal with someone who was deafblind. Finally someone at Strodes College said “we have never had anyone with Usher syndrome before, but we really want to learn and work with you.”  How did that make you feel and did they follow through?

MJW: I didn’t fully believe it until I started the college, I was in doubt and was ready for it to go wrong again! I was always always preparing myself for the worse, as sad as it sounds, I shut myself away from a lot of people and even did from the people at the college when I first started because I was frightened to open up to people and feel let down again.

After some time, within the first term there I started to feel so much more comfortable in my own skin… People at the college knew me no different, and thats what I liked, they accepted me for who I was, and thats all I could’ve asked for!

MW: What do you think the school learned by having a student with Usher syndrome?

MJW: They were already so open-minded, which helped. They told me they had learnt a lot from me and really hoped someone else would come along for them to be able to use the same skills on

They told me there really wasn’t that much that they did, they said they alerted the teachers and hired a note taker who modified all handouts and corresponded with the teachers before lessons… They stressed to me that having me was really not a big deal, which was fresh news for me! I often would fee like too much hassle and a bit of a burden so hearing that from the college was a relief!

MW: You were recently shut out by a restaurant because you had a guide dog with you. You posted about it online. How has the feedback been?

MJW: Everyone I know, people who support me on social networks were incredibly shocked. It brought back horrible memories for me, but thanks to the brilliant support system I have, it didn’t take me long to bounce back to normality. It’s just yet another battle, one of many I’ll face in my lifetime. We contacted ‘Guidedogs’ and RNIB legal team, they are apparently handling things.

MW: Has the restaurant said anything?

MJW: They deny what was said! Of course… We expected that to happen. So i’ve had to write out a series of events that occurred that evening and email [the] RNIB legal team … Small stepping stones I guess!

MW: baby steps. Tell me about Uni. How long have you had her? What does Uni do for you that a cane cannot?

MJW: I have had her 3 years. Uni has a wet nose, a wiggly bum and a waggy tail and a whopping great character that helps me through my lows and never fails to make me smile! As well as being the best at her job, keeping me safe and walking me around obstacles and opening up my world of independence. Since having her, I’ve done things that I would never of done, without the confidence Uni has given me!I never got on with a cane, nevertheless a cane is always in my bag in case its ever needed- worse case scenario. 

MW: How did you come up with the video “Have you?”

MJW: I get bursts of energy sometimes, sometimes I’ll go for a run, other times I’ll get out of the house and see my favourite people or treat someone to a meal! And lastly, other times I will create a video and do one of the things I do best, to raise awareness for those with Usher syndrome

Once i’m in the zone for any of these things, no one will take me out of it. Creating a video takes up a lot of my time, and a lot of patience… I’ll often take tea. l [take] situations that I’ve been in and reflect it into a short video to grasp people’s attention and just hope for the positive feedback

MW: What kind of feedback have you received from the “Have you?” video?

MJW: What I love, is when people message me and say that when they’ve watched a video made by me and they tell me how much they related to it, and how much it helped knowing someone else knew what they were going through… suddenly someone sat on the other side of a screen doesn’t feel so lonely anymore…. And I feel rewarded for that, knowing I can help in that sense

MW: leads me into my next question: How do you use your creativity help spread awareness?

MJW: I’ve had people tell me they can relate to what i’m saying. I’ve had professionals ask me to use my videos in training for teachers working with people with sensory impairments, I’ve had parents tell me that when they first receive the diagnosis of their child having ushers, that my video was the first thing they saw, and just how much of a relief it was to watch my video before anything…

MW: What others ways have you used your creativity to spread awareness of Usher syndrome?

MJW: The other way I’ve tried to use creative to raise awareness, is by my art and also the book I’ve recently produced

Molly Watt, Frog, Froggy & FroggitMW: Yes, tell me about the book. How did that come about? Did you get in the zone again?

MJW: The book is just a short basic story aimed for 7/8 year olds that i created actually as part of a college project. Once I got the idea that i was going to write and illustrate a children’s book, I definitely got back into that zone because I knew exactly what ‘message’ I wanted in it.

The message in the book is on ‘inclusion’ which was a big one for me growing up, and people I know. Being deaf or deafblind you often felt you were the odd one out and excluded. So i figured to make a story out of that

MW: What’s next for the book? Book tour? Are you looking for a publisher?

MJW: We have 2 publishers that are interested in the book … We’ve contacted 4, and going to wait to hear from more before we make the decision with what to do! I’m considering making posters to go up in schools and perhaps another book

MW: What is the Molly Watt Trust (MWT) and how did that come about?

MJW: In England, we have a selection of charities, there are deaf charities, RP (Retinitis Pigmentosa) fighting blindness charity and SENSE, a deafblind charity, which we’ve done our bit to help out with all throughout my lifetime.

When it came to support in return, we found that people with Ushers were put to the side because they can ‘see a bit’ and can ‘hear a bit’ so therefore are ‘fine’ and forgotten! (Thats just the feeling we got)

And so, we decided too create a Trust to focus just on Ushers, to fundraise for gadgets/projects that can help us in the now and of course we continue to contribute to Usher research. MWT was created initially to raise awareness of Ushers and to help out with people who live with it


Molly and Jane Watt, Usher syndrome

MW: Who is “we”?

MGW: My family and I decided to create the trust… from the networking we’ve done over the 8 years I’ve been diagnosed, we had a network of people we also wanted to help … My mum and dad are a great help.

MW: Speaking of gadgets, I see the “Access to reading” project that sends Kindles to people. I bet that has been an amazing feeling!?

MJW: Yes it’s been very rewarding getting people to access books again! Small things really do make a massive difference

MW: Are Kindles better than iPads for people with low vision?

 MJW: Everyone has their preferences. I personally feel Kindles for reading are much better. The anti-glare/normal page look works better for me. As well as all the font sizes and contrast you can alter on there … iPads are brilliant, but not for reading a book, I can only look at the screen for a short period of time and struggle reading a few pages on one. Whereas on a Kindle, I can read a chapter no problem without getting a headache. Yeah, we find that most people with RP prefer Kindles! But like I say, some are different

MW: You can’t lower the brightness on an iPad?

Jake and KindleMJW: Yeah you can, but you still get the reflections and whatnot across the screen. Isn’t great when you sit in a decent lit room and all you can see is the light bulb reflection … That then forces you to turn the light out and sit in a dark room while plastering your eyes on a small screen, which as we all know, is just unhealthy for the eyes

MW: You are developing quite the speaking rap sheet! What have been a few of your favorite speaking appearances?

MJW: Harvard was definitely an experience! Also, the talk I did in parliament was quite a memorable one!

MW: Tell me about the tactile tour you got.

MJW: It was grand! Having spoken at the parliament they invited me back to explore the place- a tactile tour. This involved access in the House of Commons as well as the House of Lords, where the Queen appears on television.

MW: meaning you touched a lot of things?

MJW: We were allowed (unlike the other group tours) to sit on the chairs and feel the careful carved wood and art that was everywhere. [It] was really quite an experience- never seen so much gold!

MW: Do you feel like your condition heightens other senses?

MJW: My sense of smell is definitely heightened! And not always an advantage I have to say! haha

MW: Who is someone with Usher syndrome that you look up to?

MJW: Through networking we have brought a lot of people together, however i don’t really socialise with them… I do admire all the people with Ushers that are just getting on with their lives and not feeling sorry for themselves!

Molly Watt, Usher syndromeMW: well said… You mentioned at Harvard your boyfriend feels left out when you do talks and don’t mention him. Here is your chance to talk about him. How does he support you and your journey with Usher syndrome?

MJW: Lol, bless him. I got a big laugh out of that one! Haha! He was the first boyfriend where I felt I could be completely myself around. He was the first person ever to walk by my side while I worked Unis… He held my hand and that meant so much to me. Before then, I hadn’t even worked Uni with any of my local friends… None of them had even seen me with her, because I didn’t have that confidence. Whereas Dan helped me overcome those fears

MW: You also talked about traveling at Harvard. Is there anywhere special you want to go?

MJW: Where do i begin???

MW: top two places!

MJW: Hawaii and Vegas!

MW: ha ha nice! two opposites

MJW: Thailand! I wanna ride an elephant! And Mauritius.

MW: Do you feel a sense of urgency to go places before your vision gets worse? Is it supposed to get worse?

Hawaii, Jason O' RourkeMJW: Yeah when i was first diagnosed I felt like I was in such a rush to do things. But then with my depression, I felt i couldn’t get anywhere in life. But now, I feel that whatever will be, will be. I really do hope I get the financial privilege to travel to nice places in the holidays I get when I’m teaching!

MW: Do you expect your vision to get worse from where it is now?

MJW: I am told anything could happen… When I over think about it and get all upset which I do every now and then, I do get worried. I don’t have a lot of faith in what the professionals have told me. As I was told at 12yrs old that I wouldn’t lose any of my sight until i was in my late 20s… but within 2 years I went from being partially sighted, to registered severely sight impaired- equivalent to legally blind. So already I’ve lost a lot of vision, so whether that stables for a while or not… I don’t know!

MW: What advice do you have for those struggling with the diagnosis of Usher syndrome? What advice do you have for family and friends of those with Usher syndrome?

MJW: Social media brings everyone together! When it’s used correctly, it is brilliant! Those struggling with Usher syndrome, I will advise them to try NOT to hide themselves away from reality. Talk to someone, anyone, whether it’s on the internet or to a counsellor or a friend or a family member. It can be the hardest thing opening up to somebody, but to try and get used to talking about anything and everything definitely helps in the long run

Also to take up a hobby, Keep yourself occupied to prevent negative thoughts. Live everyday like it’s a new day and don’t worry yourself with the internet self diagnosis- because every individual with Usher syndrome is completely different.

The family and friends, just let them know you’re there. Don’t pester them. but just be sure to let them know frequently where you are when they need you. Wait for them to come to you, and wait for them to talk about it to you instead of pressuring the subject onto them

Time definitely helps.

Thank You Molly Watt for taking the time to chat with me. If you would like to learn more about Molly and the Molly Watt Trust, please visit her website. You can also find and engage with Molly on Facebook and Twitter

Thank you Molly for the photos and Jason O’Rourke Photography for the picture from Hawaii. Livin’ up your Facebook News Feed with his beautiful pictures!

2014 Usher Syndrome Family Conference – Family Panel (transcript and video)

Chloe Joyner, Elaine Ducharme, Mike Walsh, Molly Watt, Ryan Thomason, Usher Syndrome CoalitionPanel:  Psychological Aspects – Patient Journeys

Family Panel: Ms. Elaine Ducharme, Mr. Ryan Thomason, Ms. Molly Watt, Ms. Chloe Joyner, Mr. Mike Walsh

MARK DUNNING:  So our next session is our — probably the most popular thing we do at these conferences.  It is our Family Panel.  So I would like to ask Molly and Chloe and Mike and Ryan to come down.  And I’m going to check with Elaine and see how she would like to play this.  So if you guys want to come on down.  And I know that David Alexander wanted to say a word about a project that his daughter is doing.  So while I figure out what is going on with Elaine I’ll have you say your two minutes.

>>:  Hi.  My name is David Alexander, and I want to thank Mark and everybody else for giving me this two minutes.  Uhm, I’ve spoken to many of you about what I’m about to talk about, and I’ve been given two minutes, so I’m going to go fast.  Put on your seat belts and we’ll do that.

Uhm, I have a daughter, 35 years old named Rebecca Alexander who, uhm, has Ushers 3, that is associated with Azeshanic Jews.  And Rebecca is a psychotherapist living in New York City with a very thriving practice.  She also has been doing, for many years, ah, teaching spinning classes, and she also, crazy as it may be, ah, does these civilian military combines where you are crawling under barbed wire, and crawling over fences, and all I will say about that is exercise is key, Usher Syndrome or not.

Rebecca has written a book titled:  “Not Fade Away” which will be released on September 10th of this year.  Uhm, it is about to get national attention.  I, uhm, cannot tell you what it is because it is not public yet, but you’ll be able to, ah, read about that.

She will also be on the Today Show on September 15th, I believe it is, and some of you may know, but a number of years ago Meredith Viera and along with Rebecca’s brother, her older brother Peter, did a piece on the Today Show.  And Peter recently did a piece on a young woman, she is actually a young girl still, uhm, in Manchester, Michigan, which is near Ann Arbor about Usher Syndrome, so he is doing his damnedest to bring the awareness of Usher Syndrome and RP and these other diseases.

The purpose for her writing the book is several fold.  One is she wanted to do it for a long time.  She wants to do it to help people who are similarly situated to herself.  Or have other, ah, RP diseases, or frankly any other type of disability.  Ah, as importantly she is doing it to raise the visibility of retinal degenerative diseases, including, especially, Usher Syndrome, throughout not only the United States, but throughout the world.

Uhm, the book is very personal.  It is, ah, very positive.  It is not pie in the sky or naive.  And it is not religious in any sense.  Uhm, traditional religions, I guess, other than ones just having faith.  And it is very powerful and very positive.

And so I, uhm, ah, I recommend it when it comes out.  Not just because I’m entirely biased.

( Laughter )

Ah, which is obvious.  But, ah, but other people who have read it, and who have commented on it, including Meredith Viera, and Rebecca will be on her show when it starts.  And the woman who wrote Brain on Fire.  And others have said that.  Those are not just my words.

So I’ve been handing out these cards, and if you don’t have one and you would like one, they are out by the table.  And I’m done.


Mike Walsh, Chloe Joyner, Molly Watt, Ryan Thomason, Elaine Ducharme, Usher Syndrome Coalition, Family ConferenceMARK DUNNING:  We always have time for a proud Usher dad up here.

Okay.  So, uhm, so, ah, as usual, we are running behind.  So we are just going to keep going.  Uhm, because this usually livens everybody up as soon as we have the family panel here.

So we have, ah, tried to get a broad mix of, ah, of families.  For those of you who don’t know about the family panel, we do this every year.  It is our most popular thing that we do.  We ask, uhm — try to get a cross-section of the Usher Syndrome community.  And have them come and basically tell their stories and answer a few questions.  And then we open it up to the audience for questions, as well.

So I’m going to just ask that if each person could introduce themselves, I’ll let you guys introduce yourselves, and then I’ll ask you a few questions.  So if you can just tell us your name, where you are from, and your relationship to Usher Syndrome that would be great.

And Elaine, I guess we’ll start with you.

ELAINE DUCHARME:  Hello, everyone.  My name is Elaine Ducharme.  I am from Waltham, Massachusetts.  I grew up in Connecticut, though.  I became deafblind — I was deafblind at birth.  I have Usher Syndrome type 1.  I don’t know if I’m 1A, B, or C.  I know I’m type 1.  I had Coates disease and I lost my vision at some point.  And I’ve been fully deafblind — born deaf, became fully blind by 31.

RYAN THOMASON:  Hi.  My name is Ryan Thomason, I am 32 years old.  I have Usher Syndrome type 2.


RYAN THOMASON:  There we go.  Hello.  Not used to hearing my voice.

I have Usher Syndrome type 2.  I am from Seattle, Washington.  I’m currently living in Utah.  I have, ah, a wife and two kids.  I am an ordering product manager for a corporation, and on the side I run a website called Watch My Read.  And when I’m not doing that I’m training and competing in races.

MOLLY WATT:  Hello.  I’m Molly and I’m from England and near London.  I have Usher Syndrome type 2A.  I’m severely deaf.  And at the age of twelve I was diagnosed with retinitis pigmentosa.  You guys obviously know how it works.  And I was also diagnosed with macular edema, and that affects everything else.  So that has been really my downfall.  And as a result was having a really strong support system at home, we created, uhm, a charity, the Molly Watt Trust where we try to raise awareness for Usher Syndrome because we need it.  There is so much ignorance out there, and it, you know, it stops people getting jobs, and, you know, and you’ve all probably experienced it.  I’ve experienced quite a lot of it.

I’m 19.  I will be 20 next month.  So counting the days.

And, yeah, that’s it, really.  That is the basics.

CHLOE JOYNER: .  Hi.  I’m Chloe Joyner.  I’m the mum of two children.  One is seven, a boy, with no vision or hearing issues.  And my daughter is four and she was diagnosed with she was 18 months with type 1b.  And I’m from England if I didn’t say that.

MARK DUNNING:  We kind of guessed that.

MIKE WALSH:  My name is Mike Walsh.  My accent is not as cool.  I’m from Wisconsin so I’ll try.

Let’s see.  I have Usher Syndrome type 2C.  Uhm, I was diagnosed when I was 19.  After my brother was falling — falling around and he fell into a pond and so because of him I was diagnosed at 19.  I started getting symptoms about five years ago, and recently, uhm, I started going around the world raising awareness with a campaign called Fight For Sight.  So that is what brings me here.  And thank you.

MARK DUNNING:  Excellent.

So I’m going to get started with this question.  But I’d like to ask you:  When did you first find out you had Usher Syndrome?

What was your first reaction to it?

Would you have liked to have gotten the diagnosis sooner?

Again, I’ll start with Elaine.

ELAINE DUCHARME:  So I was born deaf and I grew up using sign language.  Obviously I’m older, you can tell.  I’m 57.  So 57 means the 60’s when I was growing up.  Uhm, I didn’t know.  People didn’t know that I had Usher Syndrome until I was about 18, I believe.  My left eye started to lose sight and I started to struggle with my right eye.  And so I knew I had problems, and my parents said eye problems, don’t worry about it, but your balance, I have pretty bad balance.  So the balance became a problem.  I didn’t have great night vision.  So I went to — I did go to a Deaf School growing up, and of course I got made fun of because kids make fun of people for stumbling and things like that.  I did start to take, uhm, family workshops, that was the only thing that was really, ah, around and available for me.  But I didn’t understand, uhm, what it meant.  And my parents really said “oh, don’t worry about it.  Don’t talk about it.”  And so eventually I went to Gallaudet University and that is where, really, I started to learn about Usher Syndrome.

My brother is deafblind, as well.  And my brother and I my parents went to Gallaudet University and they offered a family workshop, and that is really where they learned to understand this is, what Usher Syndrome is.  I was 24 when I really understood.  And I was able to talk with somebody, a man who had Usher Syndrome, himself, and started to tell me about it.  You are going to have to be prepared for tactile sign language.  You are going to need to be prepared for a cane.  And with Braille.  And I was very resistant in the beginning.  I did not want to be deafblind.  I did not want to be — I didn’t want to enter that world.  And, uhm, you know, I started saying “well, I’ll wait.  I’ll probably be blind when I’m 80.  So I’m not going to be ready for that.  I’m sure.  I’m 24 now.”  So I was obviously in denial.  So I started to really, you know, look within myself, and realize, okay, you know, I’m in denial, I need to learn the skills that these people who have Usher Syndrome are telling me, and, uhm, and by 27, uhm, I had really started to not being able to rely on my sight at all.  And I’m happy that I was able to have that kind of self-learning at 24 and able to really start to say, “okay, I need to be prepared.”  I did — I went to the Helen Keller Center, and I learned about myself.  I learned about my identity.  And I was able to — once I accepted who I was, I was really able to, you know, I was really able to take off at that point.  But I know that I was very late in understanding that.  And in accepting that.  So once I finally did, though, in my 20’s, I just took off and life’s been great.

MARK DUNNING:  Can I just follow-up really quickly.  Would you have liked to have known the diagnosis sooner?

ELAINE DUCHARME:  (Shaking head no.)  Hmm, I — boy, I honestly don’t know.  I really don’t have a good answer for you.  I don’t know because I can’t look back.  I mean that idea that I was, like, “oh, I have until 80 until I’m blind.”  That denial was — that was hard.  So maybe knowing sooner would have made me be able to accept sooner.  Once I accepted, that is really when I was able to learn the skills I needed.  So I don’t know if that would have impacted when the acceptance happened.

MARK DUNNING:  Great.  Thank you.


RYAN THOMASON:  I was diagnosed when I was 27 years old.  And we were sitting in a room and it got all dark, and they had just done an eye test and my wife was sitting behind me and the gentleman just said “you have Usher Syndrome type 2.  There is not really much we can do about it.  Find yourself a doctor.”  And just kind of left it at that.  I had hearing aids since I was two years old.  And we just never really connected the dots up to that point.  I did play sports in high school, and I was always very athletic, and doing sports in college, and everything like that.  But apparently a couple car accidents didn’t come into my parents head that maybe I shouldn’t be driving.

( Laughter )

But only one of them was really bad.

( Laughter )

But, yeah, that is how I was diagnosed.

MARK DUNNING:  So would you have liked to have known sooner, maybe, like, before that car accident?

RYAN THOMASON:  Uhm, it is a difficult question to answer because I don’t know if I were to make changes in my life.  I’m very happy with what I have now.  With my wife, my kids, my job, and who I am.  So I don’t know if I had done things differently if things would have changed.  So I’m very happy with, you know — even though it has been difficult, you know, it is my life, and it is what I have.

ELAINE DUCHARME:  Sorry.  I just want to add since you said that.  I have to so strongly agree with you.  I think, you know, as I’m thinking about the question, I think maybe it was best how it happened, you know, because I accepted when I accepted.  And maybe if I had known earlier I would have just worried for those 18 years before, you know.  So I think that I agree.  I’m happy with where I am.  So maybe it was meant to be when I found out.

MARK DUNNING:  Great.  Thank you.  Molly?

MOLLY WATT:  18 months old I was registered severely deaf and I was given hearing aids.  I’ve relied on them — I still rely on them, obviously.  But I was just deaf, if you like.  Until I was near 6.  You guys, you are educational system really confuses me.  So basically eleven years old, uhm, I started noticing I couldn’t read the board, I was very clumsy, and I got lots of headaches.  So soon after that I got registered with Usher Syndrome type two.  And they said to me I would lose a lot of my vision until I was in my late 20’s or early 30’s.  But they were kind of wrong about that because within two years I was registered — well, you call it legally blind.  Uhm, so I have virtually no vision in my left and I see through a tunnel in my right eye.  Uhm, so, yeah.

The question regarding when I was diagnosed.  I can’t really imagine it being any different.  Uhm, it has been a — it has been a tough journey, and all I can say is that I am so thankful I have my family and the support system that we have found on Facebook.  There is no way I would have coped at the age I was.

CHLOE JOYNER:  And for us, it is a story shared with many young people here.  My daughter’s deafness was picked up in the newborn screening program in England.  She was two weeks old when we were told she was profoundly deaf.  She had her first hearing aids at six weeks old.  And so the story moves on a bit, uhm, and she was late to sit, and late to walk, and the geneticist that we were seeing, just to explore the causes of the deafness mentioned Usher’s at approximately 9 months, when she was 9 months, and referred us for an ERG.  In England they have them without sedation, so they can happen on young children.  We were there for — and I guess from that point, as a parent, your heart plummets, as you perhaps remember.  And we kind of would — we didn’t receive an official diagnosis until she was 18 months through the ERG.  And, uhm, and I felt, at that time, that we had only gotten vertical after the deafness diagnosis.  So it was a big blow.  Uhm, and early stages of coming — finding my peace with it, that is the way I phrase it, rather than “coming to terms” because it is a continual process.  Finding my peace with it, the early stages were very similar to the deafness diagnosis, and we had to go through the same stages, but I think the nature of diagnosis is very different.  Uhm, you know, with the deafness we could be working on it.  We could be helping her.  Supporting her communication through various sign, exploring possible, uhm, cochlear implants, which she now has.  But you receive a diagnosis of Usher Syndrome, as we all know, and there is no immediate prospect of being able to do anything about it.  And I’ve personally found that very hard as a parent, uhm, not having any control over something so precious.  It is hard.  So, uhm, I guess the question that I would perhaps answer is whether I would have liked to have found out later —

( Laughter )

Uhm, not earlier.

( Laughter )

And I think I probably would say, actually, I don’t know — I actually would have liked to have found out later.  I understand that there are — and I’m open to other ideas.  I’ve heard different cases for this over the last three days, so I’m very much open to discussing it.  But, uhm, I think absolutely to be able to consider any practical steps you can take, that’s fantastic, and useful, and important.  But in terms of being delivered this news, which is, you know, so difficult, and yet we are powerless to change it, the best description is, uhm, that dream you have when you are walking and you can’t get anywhere.  You are just heading towards something that you are powerless to change, and yet you are very frightened of it.  And that is how I feel as a parent.  I mean every step that we can take to empower ourselves we will take.  But I still think it is very hard to live with a diagnosis like that from such a young age when you — when you are not anywhere near even the treatment stage or anything that you can do.

MIKE WALSH:  Uhm, yeah.  Like I said before, I was diagnosed at nineteen.  And my reaction at nineteen, I had no symptoms, uhm, everything was peaches and cream, you know.  I could drive.  I could play sports.  Peripheral vision was excellent.  I had — and going further back I was diagnosed with having — needing hearing aids around three.  But when it comes to Usher Syndrome, life was good.  And then all of a sudden my parents are dragging me down from Madison, Wisconsin to see a specialist, Dr. Fishman.  And all of these crazy eye tests, you know, painful.  We’ve all been through them.  And, ah, you know, all of a sudden they are like “you have Usher Syndrome. ” And as I said before, this all happened because my brother fell into a pond.  Yeah.

( Laughter )

And, ah, so he has hearing aids, as well.  So we both had hearing aids, and we are brothers.  He is five years younger.  And, uhm, and so they have connected the dots and they suspected him, so therefore me, as well.  And, ah, so all I can think of, if not for his diagnosis — for his early diagnosis, I can only imagine had I been driving along at night in the past few years, I stopped driving a couple years ago, but had I been driving along and not knowing what was happening, just assuming I was having a bad eye day, something serious could have happened.  But to answer the question if I wish I had known about it earlier, uhm, I would actually say I wish that, you know, in a perfect world I would like to know about it later because at nineteen I had no symptoms, and so basically between 19 and the time that I gave up my driving at 35, uhm, I’m 37 now, so about two years ago.  For sixteen years my parents were like “how’s your vision?  How’s your vision?  How’s your vision?  How’s your driving?  How’s your driving?  How’s your driving?  How’s your driving?”

( Laughter )

They really asked me no other question in life.

“How’s your eyesight?  How’s your driving at night?”

So, ah, so —

( Laughter )

— thanks to my brother, I knew.

There is my dad over there if you want to bug him.

( Laughter )

He is taking a picture and doesn’t know how to use that phone.

( Laughter )

He is a great support though.  Thanks.

MARK DUNNING:  Okay.  Excellent.


So I think you guys have sort of touched on this, and again I’ll start with Elaine and we’ll work our way down.  But how has Usher Syndrome impacted your daily life?

ELAINE DUCHARME:  You mean my life now.  So let me think.  Today I don’t even think about the word or, you know, Usher Syndrome.  I mean I’m 50 — I’m almost 58.  I lost my sight 30 years ago.  I’ve been deaf all my life.  So I really think of myself as human.  I mean I’m just Elaine.  I think that is because it is so long.  My daily life, I don’t think about it anymore.  I forget.  I’m just very used to it.  It has been decades that I’ve been a deafblind person.  Yes, I have Usher Syndrome.  Yes, my name is Elaine.  But I don’t really think about it day-to-day anymore.  I am so used to, ah, to — so used to that.  I’m so used to who I am.

Uhm, and, uhm, you know, obviously everyone needs the support that they need.  And they need their family and their friends.  My wife and my family and friends are incredibly supportive and helpful.  But at this point my life is great.

MARK DUNNING:  Okay.  Excellent.  Thank you.


RYAN THOMASON:  Uhm, my daily life starts at 6:15 in the morning with my six-year-old poking me.

( Laughter )

Telling me I need to get up and be dad.

So, uhm, and then I spend the morning with my kids, and my wife takes me to work.  And she is pretty much the reason why I can get around and do stuff.  My wife is Wonder Woman to me.  She does a lot for our family.  And I just work and I get home and I’m dad again.  And kids go to bed and we have some adult time and then it starts all over.  Uhm, you know, little things do happen here and there, but, you know, at this point I’ve just kind of learned to brush it off and to keep going on.  So my — so my family is a major distraction for me.

( Laughter )

When it comes to Usher Syndrome and all of that kind of stuff.

MOLLY WATT:  Sorry.  Can you repeat what your question was?

MARK DUNNING:  So how has Usher Syndrome impacted your daily life?

MOLLY WATT:  Uhm, well, I think because my sight, ah, progressed much quicker than I thought it would, uhm, my life’s changed quite a bit in the last few years.  So what my daily passions were a year or more before, has changed.  I have a guide dog and she couldn’t come because she had a bad gut.  So I thought it would be — putting her on an airplane for seven hours, people wouldn’t appreciate a dog with a bad gut.  So she is home.  So she is my other half, really.  She is, uhm, I rely on her 100% now in the dark, during the day.  Whereas before it was just in the dark.  Uhm, in crowded places, I get really claustrophobic.  I’ve just finished college where I received really, really good, ah, support that involved a note-taker.  So, uhm, so I received all my notes through e-mail and I did a lot of my work on my Apple Macbook where the accessibility is brilliant.  So because I was lucky enough to have the technology and support system at home, my daily routine at the moment is okay.  I’m still able to live things — do things like everyone else at the moment.  So I think that is how it should be, really.  So at the moment it is just, you know, you know what it is like, you just plug along until something else changes and you have to find new strategies, you have to find new ways around things.  So, yeah, that would be my answer.

CHLOE JOYNER:  Uhm, my daughter’s vision hasn’t yet deteriorated, apart from night vision.  So our daily lives are not really affected by the reality of living with Usher.  But they are affected by the prospects of living with Usher.  Uhm, we have to spend our energy, apart from having fun and being a family and raising two young children, the energy that is left over from that, uhm, we split between trying to prepare ourselves as a family, and prepare our child, and her sibling for life with Usher, and prepare ourselves as parents.  And trying to also do the things that we can do to change the reality that may face her later on.  But we try and focus on the challenges now.  The one, uhm, thing I was saying, my daily life that I’m affected by Usher is a small period, uhm, just before sleep, each day, uhm, I like to go to bed quite early and enjoy that when you get to read a book.  Instead, since my daughter has been diagnosed, and this might sound really negative and I hope it doesn’t, but perhaps other parents will relate to it.  I find that period when you are not doing the usual things to your brain to stop it from thinking negative thoughts, when you are about to drift off to sleep, and you start inserting difficult thoughts you need to tackle, that is a challenging time for me.  And I have found since my daughter is diagnosed, I wait until I’m completely exhausted to go to bed because I really dislike that period when I start to worry about the future, basically, and I don’t have enough, uhm, enough to help me get through that.  So that’s one thing that my daily life is affected by Usher.  Uhm, Usher Syndrome.  And I think that it is a sign that, you know, it is a continual process to be able to come to learn to live with the syndrome and the prospect of it.


MIKE WALSH:  So daily life.  Uhm, I mean I’m often trying to figure out different ways to say “what?”

( Laughter )

“Pardon?  Excuse me?  Didn’t hear you.”  By the third time you just nod.

( Laughter )

Anyway, uhm, so when it comes to vision, you know, it is — in the last year or so it has been very interesting.  I wear hats now.  Seriously.  Stop.

( Laughter )

Uhm, so that’s been new, uhm, daily life.  So it has been such a, ah, a big part of my family in terms of raising awareness and we help raise money.  My brother is a stand-up comedian, most of his act is about being blind.  So there is a lot of talking about it.  More so recently since I started my campaign in January.  And so I’ve — I went from being extremely passive about my condition.  And even when I stopped being able to drive at night, and then stopped being able to drive altogether, I was like “all right, I’ll just get rides everywhere and be forced to talk to my parents more.”

( Laughter )

And I even fooled with a plane.  My friend, all right, go ahead.  “Is this legal?”  So I can still do a lot of stuff.  And it has been an adventure.  My daily life right now is learning as much as I can and being the opposite of passive about it.  Like Molly said, it is about strategy.  Tomorrow my vision will be a tad different, but more so like a couple years from now.  I love technology, and everything that is happening, and I’m really excited about all the stuff.  We all saw the stuff about the finger reader that the guy was developing here at MIT.  That is cool stuff.  And I hope to check that out soon.  Yeah.  Life’s good.

MARK DUNNING:  So let’s start with Elaine for the — for this next question.  And you guys have all sort of alluded to this.  And I think we already know a lot of the answer.  But, uhm, what is your most significant support mechanism?

ELAINE DUCHARME:  First, of course, is my family.  As for most of you, I’m sure, my family has been a great support system for me.  My siblings support me so much.  The positive people around me, uhm, who share their energy with me, and share their support with me, and allow me to support them.  I’m allowed to work with people who have Usher Syndrome and offer them support when they are going through grief and empower them through their journey has been incredibly helpful.  Teamwork is really key and has been key for me.  I want to make sure that I see happy people every day and work with happy people every day.  Uhm, I love hanging out with people, people call me the Queen Social Butterfly.  I’m always with people.  You will see me always chatting with someone.  And for me that is a really big support, too.

RYAN THOMASON:  My wife is my biggest support system.  We have been married for 6 years before I was diagnosed.  We got married at 21.  So, uhm, so diagnosed at 27.  And my son was already one years old at the time.  So, uhm, so she has definitely been my biggest support system.  You know, through the highs and the lows of everything.  Uhm, and my kids, obviously, uhm, my son is — he is very, uhm, aware of what is going on.  So he, you know, he helps, you know, a lot for a six-year-old, even though he probably shouldn’t.  But, uhm, and then, you know, just my family, you know, my aunt started a foundation to raise money for Usher Syndrome, and the rest of my family has been really active in trying to, you know, help support that every year.  And, you know, and raise money.  So, uhm, so definitely been having a great support system so far.

MOLLY WATT:  Uhm, yeah.  I have to agree.  Definitely before anything, family.  My family are all very positive, outgoing people.  I always say in all of my talks just how grateful I am to have them.  My grand dad always said, you know, life you are dealt — you are dealt a hand of cards and it is just how you play them.  Uhm, so that is something that has always stuck with me.  And that just goes to show the kind of family I’m from.  And also it would be the whole networking family.  Uhm, I’m seriously overwhelmed by the amount of networking that we have done, and I mean where would we be without social media?  It is just amazing to meet people from other countries that we have met through Facebook.  And I mean the messages that I get online on a daily basis, they just mean so much to me.  Uhm, so, yeah, definitely it has got to be family, friends, and of course — I mean he will kill me if I don’t call him out on this, but my boyfriend, as well.  He is good, too.

( Laughter )

He always gets mad when I don’t mention him in my talks.  Yeah.  So definitely my family.  My friends.  And of course my boyfriend.  The best support system I could ever have.  Yeah.

( Laughter )

CHLOE JOYNER:  So thinking of support, I would say my partner.  Although we have actually dealt with it in different ways, we have still provided support to each other.  And continue to do so.  But also my friends and friends that have become friends since the diagnosis have been really important.  And they have sometimes come from unexpected places.  And, uhm, and unexpected people, but they have just shown themselves to be really special people and I am now lucky to recognize how important that is from within this community and the strength that I take from those people and from daily life, as well.  Uhm, so I would say that my friends and my partner.

MIKE WALSH:  Yeah.  I’m going to go with family, too, just because everyone else said that.

( Laughter )

Yeah.  My family, my dad who is about ten feet from me, still trying to take pictures.

( Laughter )

Got it?

( Laughter )

I mean — did you get it?

( Laughter )

All right.

Yes.  So he is a great guy.  He is on the board of the Foundation Fighting Blindness.  So the minute we were diagnosed he was on the phone with whoever and, you know, he has done a lot of great work.

And then of course my brother, I mentioned him before, we sit around and have a lot of fun about it.  As I said, he is a stand-up comedian, so we have — we write jokes all the time about being blind.

( Laughter )

I’ll tell you all about my blind dates.

( Laughter )

I am single.

( Laughter )

Molly mentioned, ah, about social media, and that’s amazing.  Uhm, I would like to, ah, I want to say Facebook groups are pretty amazing.  I have found, just in the last couple of months, I’ve been playing around with them.  Facebook groups, if you type in Usher Syndrome, there is a really big Usher Syndrome group.  But even more so there is a big retinitis pigmentosa group, and you can ask a question on there, and you will get 20 responses in, like, a day.  Just people with their experiences.  Uhm, it is really, really wonderful.  So I recommend you check them out.  And you can be on them anonymously.  There are closed groups.  Public groups.  Be careful with that, however you want to approach it.

And also the other support, of course, since I started my campaign on Facebook, Fight For Sight page, I — in just a couple days I announced my condition to all my family and friends.  A lot of my friends didn’t know about it because I’ve always been passive about it.  So I just exposed myself.  And within a few days I had 15,000 views on one post and, uhm, and, you know, 600 likes by the weekend.  Uhm, and so it was really amazing.  People were asking me questions.  And part of my journey was to figure out “how do I answer those questions?  How do I explain it better?”  They say “what was that about?  I didn’t know that about you.”  Because it is a hidden thing.  So you just never know about people and the experiences they have.  That has been an amazing support, all the online support, people, friends, and the people I haven’t met.  And I’ve met people here who are following me.  That has been interesting.  All right.  Thank you.

MARK DUNNING:  So, uhm, so you guys have all been very positive about everything.  I’m going to, uhm, to — I don’t want to bum anybody out, but I do want to ask a question.  Can you describe for us your most difficult experience you’ve had because of Usher Syndrome?

ELAINE DUCHARME:  Can I answer last on this one?

( Laughter )

Can I take a pass and be the last person to answer?  I need a little bit of time to think about that.


Ryan, are you ready to go?

( Laughter )

RYAN THOMASON:  I’ll take this.  I’m not as funny as Mike.

( Laughter )

Probably the hardest stuff was from before I was diagnosed.  As I mentioned, I got in my first car accident when I was 16.  I didn’t see that the stoplight had turned red and didn’t notice it until the last second, hit my brakes and hit a police car going through the intersection.

( Laughter )

And then my second accident I accidentally pulled out in front of a car and got T-boned and a couple — and went 40 feet into a ditch.

So, uhm, you know, just walking on college campus at night and walking into a tree and everyone asking how much I had to drink.  And I was like oh, a lot.  But I didn’t have any.

( Laughter )

Just, ah, but those — but the more recent stuff has been the more emotional for me, uhm, we just — we took a family vacation with some really good friends of ours to Las Vegas, and as you know, Las Vegas on the strip is very busy.  And walking with my six-year-old and my wife trying to, you know, keep my four-year-old and all of us from running into stuff, and my six-year-old devised this system to, you know, he would hold my hand, squeeze it two times and he told me that meant I needed to stop.  And then if I squeeze your hand three times that means we can go.  And if I pull your hand a little bit this way we are going left.  And if I push your hand that way we are going right.  I think it was more of a devised mechanism on how to control dad more.

( Laughter )

But he did that on his own because he knew I was having a hard time with all of the people.  And that really impacted me emotionally, and I got him an extra nice present from a store for doing all that on his own.  So that is really been the hardest thing, just emotionally, ah, with my kids and stuff like that.

MOLLY WATT:  Uhm, well, I don’t really necessity how to put this into simple terms, really.  When I think — I think the hardest thing for me was because I grew up as, uhm, many of you know as a deaf child, very visual.  So I relied on lip-reading.  And I did get by in mainstream pretty well.  And then it wasn’t until my sight got pretty bad where I thought that I would need better support, maybe smaller classrooms, and I thought this would be better, and in a School for the Deaf.  There is actually a boarding school in England.  And I went there and ironically I — at this point I was in denial about going blind.  So I actually thought “oh, yeah, I will be just like everyone else.”  I wasn’t.  Uhm, I kind of — I got bullied because I wasn’t like them.  Uhm, I couldn’t sign.  I couldn’t understand what they were saying because of the lack of sight I had.  Uhm, and it was kind of that realization that actually I’m not like them, and I needed my sight, and it was trying to convert from being such a visual person to using my residual hearing.  And that was the biggest, like, hardest transition I’ve ever had to make.  Uhm, yeah, I think that is definitely hard.  And, uhm, and following up the whole experience at boarding school I was bullied pretty bad.  And when I left I had pretty bad anxiety and depression.  I had to go to counseling sessions.  I refused to go to out of the house.  I didn’t want to be seen.  I didn’t want to be seen out or with my guide dog.  And those three years of my life were really difficult.  And I still go to counseling, but a lot of those issues I’ve overcome since I’m not in denial, I’ve accepted what is happening to me now.  So things are getting better.

CHLOE JOYNER:  I think, for me, the thing I find hardest is just sometimes it will strike you.  You think you are doing really well and then suddenly you see something or you just random on a Tuesday afternoon and a thought comes into your head.  You can just get that frozen sense of dread, uhm, as a parent.  But yeah, I guess having something outside of our control for our daughter is something I find very difficult to accept and deal with.

MIKE WALSH:  Uhm, yeah.  Difficult points.  I guess growing up when you have hearing aids and you are in a high school where no one else has hearing aids, uhm, it is very, ah, stagnant socially.  You wonder why you don’t have a girlfriend and stuff like that.  Uhm, but then you grow up, I’m growing up, do we have a grown up?  When you become, or nowadays, ah, when I meet people, especially with my campaign, I, ah, people ahead of time know about my situation.  And when I meet them they are really excited to meet me.  And, ah, and so forth.  And so it is — you become more, like, this is part of who you are, and it is interesting.  Everybody’s unique, and in different ways.  So you just kind of own it.  “Yeah, I have to wear hats all the time.”  I get to wear cool hats and cool shades.  You just kind of own your life.  And as far as other difficulties.  And Ryan, Ryan would be happy to know I’ve crashed a few cars even with no symptoms.

( Laughter )

So, you know… difficulty — well, like I said earlier, I’m always trying to hear better.  For me the hearing is actually harder than the seeing.  Seeing, I don’t know, I can get through it.  But you always miss things here and there, you can’t — you need to have people repeat them.  But one instance I can remember, uhm, was, ah, just slicing my head open the night before a final and showing up with stitches in my head.  My face.  It was right there.  And the teacher gave me a weird look.  But just little things like that, bumps and bruises there, but you heal, it is amazing.

MARK DUNNING:  Elaine, do you want to answer this question?

ELAINE DUCHARME:  I am ready.  Thank you for giving me time to think back.  I’ve got a whole life to look back on.  And I have similar bullying in schools.  Similar stories about “are you drunk?”  And I’m really just bad balance.  I have people who would, you know, make fun of the fact that I bumped into tables, and all of that.  All growing up I had that.  Uhm, it was hard on my family.  I would — I would bump into them a lot.  Or I wouldn’t see something that was on the floor.  Like I remember, you know, my mom had just cleaned the kitchen floor and I bumped into the cat’s bowl and it knocked over everything and she had just cleaned it.  That kind of thing.  That you are not realizing why you are doing this.  Or on the basketball team in high school, I passed to the wrong person because I couldn’t see her and I got called out for that.  I remember I went to Rochester institute for technology for a nine-week session, and I got an infection in my eye, it wasn’t related, but it meant I couldn’t see for a period of time.  And I remember that, you know, I tried to take some sort of self-defense class or something, and I couldn’t do it.  I couldn’t do anything that I was used to doing.  And I went outside, and I realized that I couldn’t see at all.  And I bumped into someone who, you know, promptly yelled at me like “what are you doing?”  And to me it was completely dark.  I couldn’t see anything.  I didn’t know where my dorm was.  I just, ah, remember, you know, hoping, like, “I think it is this way.”  And I just decided that I — I had to fly home.  I quit college at that time because my vision just went for a very brief period of time, very quickly.  And, you know, it was — that was hard.  It is always hard at night, you know, socializing with friends when it is dark.  It is really hard.  Uhm, and I’m not able to, you know, enjoy.  So in college I would, uhm, I would just drink more so that —

( Laughter )

— because I was bored and I couldn’t see what anyone was saying.  So that wasn’t a great coping mechanism, but I did that for a while.

Once I was fully blind, that was a big challenge.  Like I said before, I didn’t want to learn Braille.  I was in denial.  I mean I accepted it once I was there, but I hated it.  I still kind of hate Braille, you know, honestly.  You know, I accepted it, and I have learned it, and I have moved along.  I know who I am.  But those were all challenging years.  I would say, uhm, you know, through my teens and my twenties were the most challenging, uhm, times.  And during my career I just have learned to work my way around many of those challenges, but I would say the early years were the hardest.

MARK DUNNING:  Okay.  Thank you very much.  And I know those are difficult things to talk about, which is why, uhm, I want to ask you what has been your happiest experience related to Usher Syndrome?  Elaine, do you want to go first or start at the other end of the table?

ELAINE DUCHARME:  I’m good.  I’ll take this one.

( Laughter )

Happiness is good.  All right.  Let me see.

So I would say I lost my vision mostly at 27-28, as I told you.  So I was — it was a very hard time in my life.  A sad time in my late 20’s.  Uhm, so, uhm, I hadn’t really experienced social life with, uhm, with Usher Syndrome or deafblind people.  Mostly hung out with Deaf people.  So I went and joined, there was an association for, uhm, deafblind people by Helen Keller.  I went, uhm, in ’84, I believe, it was in Seattle, Washington.  And that was the first time where I was in a large group of people who have Usher Syndrome.  Usher Syndrome one, two.  That moment, for me, was — it was lovely.  It was really meaningful moment.  I remember that, uhm, and I think that is the moment that I really started growing, as a person with Usher Syndrome.  I really feel like since that moment I was able to find happiness.  I was able to just say, “okay.”  I have a lovely wife.  I have lovely friends.  I love, uhm, I love my life.  And I was able to, uhm, to — I was able to do that.  I actually love being a deafblind person.  It is great.

MARK DUNNING:  Thank you.

Ryan, do you have a happy moment?

RYAN THOMASON:  I’m always happy.

( Laughter )

Because I’ve got two kids that don’t make me — they don’t give me a choice.  I have to be happy.  They are always doing fun stuff.  And keeping me smiling and entertained.  And, uhm, I think one of my more recent experiences on Father’s Day, we went to a place called Anna Island, it is a big ranch, and they have some fun stuff.  And I always — one of my first things when I was diagnosed was I — I’ve always been into sports growing up.  And something that always worried me was would I be able to play, you know, football with my son?  Would I be able to play catch with my kids?  And on Father’s Day we had mitts, and gloves, and someone through a baseball at me and I caught it just fine.  And I felt really good about that.  And we played catch for a very long time.  Just as a family.  We were just throwing the ball around.  And, uhm, and, you know, I didn’t really tell anybody about that.  But it is — but that was a really happy moment for me.  Just being able to do some of the stuff that I never thought I was going to be able to be with my children.  So my kids are always trying to find ways to keep me happy.

MOLLY WATT:  Uhm, I think, uhm, actually just after the darkest part of my life, uhm, I was forced into a gap here.  So I wasn’t in education for a while.  And like I said before, I didn’t do a lot.  Uhm, and we started searching for other colleges for me to go and complete, uhm, my two-year further education, ah, course.  And a lot of the local colleges refused me because they had never had anyone like “me,” and I don’t know what that means.  But as soon as they heard the word “deafblind.”  It is like “oh, no, we haven’t had one of those.”  But we eventually found this college, which is about half-an-hour drive from where I live.  I wouldn’t go and see it because I was frightened at that point that I was going to get rejected again.  I just thought no one was going to want me and I wasn’t going to go very far in life.  And my mum went and they said that the — mum said — she spoke to them.  And they were — they were very open to the idea.  One of the first things they said is “look, we have never had anyone with Usher Syndrome, but we really want to learn and work with you.”  And that was the best attitude I could have ever asked for.  I then went onto go to that college and I — and I restored my faith in the community again.  It was like “oh, there are actually some decent people out there now.”  And so it felt really good to actually be accepted for who I was, to be able to walk around the college, with my guide dog, not being bullied, and just generally feel comfortable in my own skin.  So I think, as I say, the last couple of years I’ve come such a long way.  And so I think that really does reflect, probably, one of the happiest moments of my life, really.  Just knowing that I could actually get far in life now that I’ve got these qualifications, going to university.  So, yeah.

CHLOE JOYNER:  Uhm, for me two things come to mind.  Swimming lessons are quite comical in our family.  Uhm, me desperately signing on the edge of the pool, uhm, and every week they create new, uhm, tricks for the kids to do, and there is me desperately trying to make up signs, and she is like “can I jump now?  Can I jump now?”  So that is always good for a laugh.

( Laughter )

And just thinking slightly more profoundly.  I think I feel very strongly that the process, uhm, this all the families in this room, and all the people who support people with Usher Syndrome go through and their adjustment to being all that person needs, or to be all that child needs is a thing of beauty.  And I really just see that in all of the different examples I can see around the room.  And I take so much strength from that.  Uhm, I really do.  In any, uhm, moment when I’m finding it challenging, and it gives me a lot of happiness and strength to see that beauty in action of people providing support to other people.

MIKE WALSH:  Speaking at Harvard.

( Laughter )


( Laughter )

I mean it is Harvard.

( Laughter )

Happiest moment.  I guess what has been fascinating, uhm, so I’ll — up until, ah, late January I have always kind of never really thought about Usher Syndrome, you know, something that my brother and I had.  But the last six months have been amazing with the campaign and all the people that reached out to me.  They want to learn more about it.  And it forced me to, like, learn more about it so I could teach them.  And, uhm, just all the people that I’ve met have made me very happy.  Uhm, and, you know, this is an excellent room of great people, and panelists.  Like Ryan and Molly.  I’ve seen them online the last couple months.  Here they are live, and we are talking, and I have made new friends.  So it is just — this is great.  It is the community, you know, and the more we work together and go forward and, you know, and let’s be happy.  What is the happy song?  All right.

( Laughter )

MARK DUNNING:  Great.  Thank you very much.

So I have one more question for you guys.  Uhm, so what are your plans for the future?  Elaine, do you want to go first?

ELAINE DUCHARME:  Future plans?  Hmm.  Let me see.  I would say my future looks like to continue to be a supporter and advocate for the deafblind community.  Uhm, I enjoy working with the deafblind community.  There is some people who, uhm, still have vision left and I really enjoy working with them and supporting them through the transition.  I feel like I have a lot to offer.  I feel like, uhm, my part and my mind are really open to them and that’s — and that’s really my calling.  It is the people I love to work with.

If and when I do retire, I’ll certainly continue to volunteer, to train people to make sure that people, ah, continue to have a positive attitude about their life with Usher Syndrome, that it is important that they know who they are, and what their identity is.  And not to let, uhm, ah, depression get them because I don’t know if you’ve heard, but Usher Syndrome doesn’t kill you.  So everything is good from there.

( Laughter )


RYAN THOMASON:  Uhm, I’m kind of at a bit of a crossroads at this point, you know, 32 years old and, uhm, my wife and I are talking about going back to school.  Either getting my MBA or, ah, re-training, ah, in a totally different profession.  And starting in a, ah, in a different career path than what I’m doing now.  Uhm, so, uhm, so, you know, I’m trying to figure out, you know, if we are going to go that way, or what we are going to do, and, uhm, and, you know, and just enjoying all of my time with my wife and my kids.  And that’s pretty much all I really have for my future.  I just want to be with my wife and kids and have fun because that is what we do every single day.

MOLLY WATT:  Awwww, a cutie.

( Laughter )

Future?  Uhm, yeah.  I, hopefully, if I pass, I find out my results in, uhm, in August.  Uhm, I will be starting university in September.  Uhm, to basically become a teacher.  Uhm, yeah, I want to teach around nine or ten-year-olds.  In England we call it primary school.  I want to teach that age group because they will be talking human and not like monkeys.

( Laughter )

And, ah, and I will have my own classroom, so I will have my own big fancy chair.

( Laughter )

And I will be able to teach the class, I reckon.  I don’t think I will be teaching that long, oddly enough.  I really do want to carry on doing my motivation will talking for my family’s charity that we created.  Uhm, I really, actually, wish that, hope, that one day I will just be traveling and talking because I would love to see the world, while I can, and talking to people, and meeting people with Usher Syndrome is such a privilege.  Uhm, so yeah.  So two kind of objectives, really.


CHLOE JOYNER:  For us, our plans, uhm, well really it is up to my daughter.  I have a lot of faith in her strength and spirit.  She is a very determined young girl.  So, uhm, so I’m just going to watch as a bystander, I guess.  But I’m going to also personally learn from the people in this room and try to make as many connections as I can to understand, uhm, as a bystander and someone in the wings supporting her, to give her all the chances she needs to become the woman she will be.


MIKE WALSH:  Barbecue.

( Laughter )

Future.  So the last six months, ah, I’ve been traveling all around the world.  Thirteen countries.  Twelve states.  Something like that.  Uhm, and I want to keep going.  And, ah, and keep meeting people.  And blogging about them.  And posting that.  And so I’m at the point where, ah, I’ve had some great support from Delta Airlines, and I’m — and I will be finding some more sponsors, and I will be using crowd funding.  We have all heard about Kickstarter.  And so, uhm, so that is the future.  Hopefully more traveling in the next six months, and, ah, you know, it has been great.  And I look forward to meeting you all.


MARK DUNNING:  Great.  Well, thank you very much, guys, for everything, uhm, up here.

Normally we try to do a Q&A right now.  But Mike mentioned — who on the panel is going to the barbecue?  Everybody going to the barbecue?  Yes?  All right.  Excellent.

So how about if we do our Q&A at the barbecue?  So that we can get to the barbecue, eventually.

RYAN THOMASON:  Can we do it before I get barbecue sauce all over myself?

( Laughter )

MARK DUNNING:  We’ll do it before you bump into the trees —

ELAINE DUCHARME:  I have the interpreters with me, so come on over and talk to me.

MARK DUNNING:  Yes.  Absolutely.

    Thank you, guys.  Thank you very much.  

*Conference Blogs:

Mark Dunning: “Notes from the International Symposium on Usher Syndrome”

Mark Dunning: “Progress! The State of Usher Syndrome Research After the International Symposium of Usher Syndrome”

Mike Walsh: “Speaking at Harvard.”

Molly Watt:  “Molly’s Thoughts on #USH2014″

Speaking at Harvard.

unnamed-2In July, I had the honor and privilege of speaking on a panel at the Usher Syndrome Family Conference at the Harvard Medical School.

The conference was in conjunction with the International Usher Syndrome Symposium. As described by the Usher Syndrome Coalition Co-Founder and Chairman, Mark Dunning, it was “the largest gathering of the Usher syndrome community in history. Three days, four nights, nearly fifty speakers, dozens of interpreters, and more than three hundred attendees.”

Conference speakers and attendees came from at least 12 different countries. The first two days focused on scientific research and developments. It included reports and open mic discussions from and with many of the world’s leading scientists studying Usher syndrome. It was very technical. View Mark’s blog to learn more: “Progess! The State of Usher Syndrome Research After the International Symposium on Usher Syndrome”.

The panel I participated in was titled “Phychological Aspects: Patient Journeys”. I was joined by: Chloe Joyner (smiling in the picture) from England, who has a daughter with Usher syndrome, Elaine Ducharme, who is completely deafblind with Usher syndrome Type 1 and two people I first met through social media, Ryan Anderson from Utah who has Usher Syndrome Type 2 and is the PR Manager/Senior Editor at WatchPlayRead and Molly Watt from England, who is a leader in raising awareness for Usher syndrome.

Being on the panel was a nerve wracking experience. Nonetheless, I hope I helped to ease people dealing with Usher syndrome, that life can still be great and full of laughs! As Mr. Dunning states in his blog, I was funny. So I guess it went ok at least.

Here is the transcript of our panel along with a few moments that were filmed.


Thank you to the Usher Syndrome Coalition for inviting me and putting on the conference. It was an interesting and fun experience. I made new friends and there was a real sense of excitement bringing the Usher syndrome community together. My hope is for people dealing with Usher syndrome to learn about the Usher Syndrome Coalition, the conference, and the community we are building. I encourage individuals who have Usher syndrome and their families to sign up for the registry to help stay connected!

San Francisco’s Heart


Technology, Connections, and the Heart of San Francisco

I recently visited San Francisco. It is one of the most beautiful cities in the world. The water, the buildings, and the landmark bridges against the majestic hills are awesome. It reminds me of the gift of sight.

I was excited to visit the San Francisco and the Bay Area because of the tech culture. Social Media plays an integral role in my campaign. Thanks to a Facebook post from Dave Morin, whose nickname in college was, my time in the Bay Area was unforgettable.

I have known Dave since 1999. We are Phi Delta Theta fraternity brothers from the University of Colorado.  We have connected over the years. I attended a talk he gave in Denver, Colorado titled “Smart Lunch with Dave Morin” in 2010. A few years ago, I contacted him regarding a Facebook issue for a memo I was preparing to gain employment at the University of Wisconsin-Madison Athletic Department. He graciously connected me with an employee at Facebook. I resolved the issue and was hired.

Dave Morin is a tech juggernaut. After college, he joined Apple and was involved in marketing the iPod to students. Being ever the entrepreneur, he discovered Facebook in its infancy and he worked for it during its startup years. He went on to co-create Facebook Platform and Connect. He is an investor in many companies and is a Co-Founder and CEO of Path, a private social network.

A few weeks into my campaign, I asked him to check out my Facebook Page and sought his advice. His response was overwhelming. He took my Facebook Page and posted it on his wall with a heartfelt note. He also sponsored the post to be shared amongst his 350,000 plus followers. It resulted in a busy couple of days online. I connected with an entirely new group of people. I received new recommendations on where to go and a 50% increase in followers. This came at a great time. I was in Ethiopia, halfway around the world and having a bad day. Dave’s endorsement energized me and gave me added credibility.Screenshot 2014-06-20 09.21.55

One of my new followers was a lady named Jackie Cartwright. In planning my trip to San Francisco, I noted Jackie’s comment on my Facebook post which suggested I message her for more advice. I pinged Jackie, and my day was lost… in a good way. She took helping me to a whole new level. She posted on her Facebook wall that I was coming and asked her friends and followers for ways to make my time in San Francisco special. She “tagged” particular people. She followed through and made plans for me. She talked about San Francisco having “heart” (she certainly has a HUGE one).

I told her I wanted to go to the Facebook Developers Conference. She was on it like “white on rice”. She knew someone that had worked with Facebook’s COO, Sheryl Sandberg. A few hours later, I received a pass to the conference. Because of Jackie, a wonderful person, whom I have never met, I obtained tickets to the San Francisco Symphony, Exploratorium, and the Facebook Developers Conference. I would eventually meet her, she showed me around downtown and we had some tasty mojitos at a swanky place called Hard Water.

While in San Francisco, I tried to do as many things as possible that were suggested to me on the “Flight for Sight” Facebook Page. I went to Fisherman’s Warf, Chinatown, and rode a bike over Golden Gate Bridge (something I can still do carefully, in a controlled environment). The most common suggestion was to visit Alcatraz. And, therein occurred another nice moment. When I arrived at the ticket office, I was told the tours were sold out for the day. I waited by the entry with the my index finger pointed up looking to buy a ticket. I did this for approximately 45 minutes. I was determined to knock this off of my list. I can only imagine what I looked like standing there with my cane in desperate search of a ticket to go to Alcatraz. But, fortunately, and as one of the many reminders I experienced during my campaign that people care, one of the staff members came up to me and simply let me on the boat. I made it to the famous rock and enjoyed a tour of the former prison.zeWsJdFmQ7lTLBg4Ym1GHvFLBWx-ff54gFyM6rewtQ4

I initially intended to stay in San Francisco for ten days. However, there were more people I wanted to meet, but I needed to find a place to stay. My Airbnb place (great company btw) was coming to an end. I found a room rented by a woman, named Collete Davis. I noticed we had two Facebook friends in common (including Dave). My stay with her and her roommates was fun. She is a race car driver. Her place has a strong entrepreneurial and athletic feel. There were stand up desks, multiple computer screens and athletic gear everywhere, including a foam roller. I was particularly excited about this. Foam rollers are great for sore muscles.

Collete lives with her boyfriend, Matt Maurer, who is a Co-Founder of a startup called Stroll Health. They wer every kind and generous. Early on during my stay, I told them I accidently left my mini TP Foam Roller (they are amazing for traveling) at the JFK Airport. As a parting gift they ordered one for me from Amazon. It was camouflage. Just what a guy with bad vision needs. They claim it was an oversight.

The Bay Area is drone heaven. I inquired on Twitter where could I see drones. Mike Walsh responded (no I did not respond to myself) while tagging a few other people (including@DaveMorin). Eddie Codel (@ekai) who was tagged, responded about a drone meetup in Oakland. It involved a warehouse of drone enthusiasts. People were flying drones through an obstacle course. Others were making/fixing them. What fascinated me most was the different kinds of drones. They came in all shapes, sizes, colors… and battery life. It was fascinating and fun to observe the operators’ enthusiasm. Perhaps Amazon Prime Air drones are not too far off.

While in San Francisco, I used an app called YPlan (Yup, Dave is an investor). It’s a great way to find out what is happening around you. It is only available in a few major cities. However, I see real potential (they are hiring). I attended an event involving Mike Maples, a venture capitalist who talked about his path to various investments including Twitter. Another thing I picked was about one of the sponsors, Majisto. It is a smartphone video creating app. You pick photos and videos from your smartphone and it makes a movie for you. The app avoids hours of editing. Since I could not be in town for Mother’s Day, I used the app to create a video for “My 3 Favorite Mothers”.10437440_10154207842725537_2804921549562543040_n

I made a second trip to San Francisco because I was challenged to go to the Twitter Headquarters. I only made it as far as security. Back in the Bay Area, I posted a picture to my Facebook Page to have people guess where I recently visited. Those who answered correctly will receive a postcard from me. One correct answer came from a follower named Cameron Crockett (who discovered my page from Jackie’s post). Cameron sent me a message with the correct answer (Crater Lake), and an address in San Francisco. I offered to hand deliver it to him. We met up for lunch. I gave him the postcard and he gave me a duck (Oregon thing I guess). He was anxious to hear about my experiences. During the conversation, he asked if there was anything I had not done that I wanted to do in town. I mentioned about going to Muir Woods to see the big trees. Muir Woods wasn’t easy to get to, but he had a car and and off we went.

Muir Woods is home to amazing Redwoods that shoot up into the sky. They were magnificent! My hand delivered postcard turned into a full day of fun. Cameron had an extra ticket to a gala. That night, I attended The Leukemia & Lympohoma Society’s Man & Woman of the Year event.

I am always looking to meet people at my favorite companies. Facebook plays an integral role in facilitating my campaign. I used a Facebook feature called “Graph Search” to determine if anyone working at Facebook was following the10387113_643618245715742_7442965063494422174_o “Flight for Sight” page. A developer named Nitin Garg showed up. I met with him and learned how I could improve my page. My good friend, Brendan Bradley, who works for Hello Kitty, was in town for “Hello Kitty Day” at the San Francisco Giants game. He gave me three tickets for myself and guests to sit in the company suite. Nitin joined me at the game.

On my final night, Jackie invited me to attend the San Francisco Symphonix Membership Party at Nespresso. It was a great way to end my time in the Bay Area – spending time with one of San Francisco’s biggest hearts! Thank You, Jackie Cartwright.

Tech Tech See


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?Jaws-for-Windows

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._67165918_67165917 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.

Nagoya-subway-M18-Nagoya-daigaku-station-platform-20100316  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.url-1

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.iphone-front 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?

Sile: Yeah.

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 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.url

Mike: Uh-oh.

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 pictphoto2ure. 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!