NPR in Baltimore highlights the spirit of a man deaf and blind from Usher syndrome
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Deaf and blind from Usher syndrome, Steven Frank’s undeniable quest to stay connected with his friends and the community is featured in this inspiring radio story from WYPR’s The Signal (NPR in Baltimore). TEXT TRANSCRIPT FOR THE SIGNAL’S PROFILE OF STEVEN FRANK: Usher syndrome is a devastating, inherited disorder that causes both vision and hearing loss. It is the leading cause of combined deaf-blindness in the United States, affecting approximately 45,000 Americans. AARON: First of all I just want to say a few words on what this story is not about… Sounds of Steven greeting interpreter Susan Heney… AARON: For our purposes, tactile sign language interpreter Susan Heney is going to be the voice of Steven… Sounds of greetings… AARON: As you’re going to hear, Steven is a real technology buff… Sounds of Steven feeling recording gear… AARON: Steven is a wiry, grey-bearded 63 year-old with unfocused eyes and permanent half-grin. STEVEN: I think I’ll just go ahead and sit here, and Susan can sit next to me… AARON: Steven, first of all thank you for taking the time to do this. I appreciate you sharing your experience with us. STEVEN: You’re very welcome. It’s perfectly fine. AARON: I understand you were born congenitally deaf, but that it wasn’t until you wre a teenager that you started to lose your vision? STEVEN: Yes, that’s right. I did not know that there was anything wrong with my vision. I did not know that I was going to be blind. I was 13 and I went to the School for the Deaf, and people were signing and waving at me, and they thought I wasn’t paying attention. And so they told my parents that I needed to go see the doctor and get checked, and they found out that I had a bit of tunnel vision. Later, I found out that I had Usher syndrome. AARON: A couple of words of explanation here about Usher syndrome… if you have it, it’ll hit you in one of four ways: early blind early deaf, late blind late deaf, early blind late deaf, or early deaf late blind. Steven falls into that last category. His vision loss has been a long, slow process of deterioration. First it was tunnel vision, then blind spots, then onward downhill from there… For him it was a step-wise process marked by having to give up various things he loved to do: driving, gourmet cooking, watching movies, reading conventional print, working his job in the library at Gallaudet University… and he says he clung to denial along the way, like anyone would… STEVEN: There was an organization called the Metro Washington Association for the Deaf-Blind, and also there was AADB, the American Association of the Deaf-Blind. But I thought, well, no, I don’t need that. I was almost offended, thinking I don’t need this organization. I could sign just fine, and I had deaf friends, and I didn’t have a problem with it. But then one of my best friends, who is deaf-blind, went to the AADB Conference and let me know that it was so enjoyable and invited me to go. And I thought why should I go? Will I know friends there? And this person said oh yeah, you’ll know the interpreters, you’ll know a lot of the people there. And so I want to an AADB conference, and I had a great time. And there were workshops, and I learned things about Usher syndrome and research. So I’d say I really learned to accept it when I was 35 or 36. Yeah, my mid-thirties was when I really started to accept what I was dealing with. AARON: When you communicate with other people who are deaf and blind, is there a shared perspective or understanding that you think maybe sighted people and people with hearing might not have about life? STEVEN: One main thing is that the social life is different. Deaf-blind people get together and they may talk about research that’s going on in the field, or going camping. We have a deaf-blind camp that we get together, and we’ll meet somebody and they’ll say oh you’ve never been to that. And so a lot of times it’s a sharing of information that people who are new to the community don’t know about. But basically we talk mostly about technology and what new things are invented in reading Braille, and computer technology. And so we share a lot of that through email. It’s very important. Before we had email it was so different. Being able to use email and Braille email has made a huge difference in our lives. AARON: When you think about it, it’s pretty incredible just how many different ways Steven has learned to communicate over the course of his life: STEVEN: First grade Braille is pretty easy. I got an A learning that. And then it of course gets progressively more difficult, and there’s a lot more contractions. For example, ‘good’ in Braille is just ‘gd’… ‘friend’ in Braille is ‘fr’… but there’s about 250 words that are used as a contraction or an abbreviation, rather than the whole word spelled out, and that’s part of learning Braille is learning the Braille vocabulary. AARON: Now, I mentioned before that Steven is a real technology fanatic. STEVEN: OK, what I’m going to show you here is a Braille display TTY. I can do a test call, for example, I’ll call the Maryland Relay, and this is how I’d make a telephone call. I have a unit here with a keyboard, and I set the telephone in a coupler that is attached to the TTY. That tone is the tone that typing the keys makes into the telephone. And then beneath the TTY is an attachment that gives me refreshable Braille, which is Braille dots that come up each time a different letter is typed. So I just dialed 711. That is the number you use to connect to the relay. And now I’m feeling with my fingers as it says “Maryland Relay – number please…’ and GA, which means ‘go ahead,’ that is how deaf people communicate when we are using text on a telephone. When we know we’re done making a sentence, we say GA. And now I’m typing and I say for example ‘what time is it now?’ And the operator is typing in response, ‘One moment, please.’ And it is saying ‘operator here… the time is 2:06 p.m. GA. OK, thanks, and I type ‘SK, SK,’ which means ‘stop keying’ or ‘end of conversation.’ But what you’d normally do is you’d call the relay and give them the phone number of someone who’s hearing, either a friend or a business or a hotel, and the relay operator here types the conversation back and forth. This is a metal strip with holes in it for me to make Braille. There’s a stylus, just a small hand-held thing that you poke through, so I call and make a doctor’s appointment and I’ll make myself a note in Braille. I don’t write myself a note if I want to remember something. I’ll pull this out and I’ll make a note to myself. I’ll actually punch it into the paper here. (Punching sounds.) And the other thing I have is for handling money. Since paper money all feels the same it’s hard to know what the difference is. So I actually have an electronic hand-held unit here that I can slide money into… (buzz buzz buzz)… and three dots means it’s a five-dollar bill. AARON: Ever since he retired, about ten years ago, Steven’s computer room has been his sanctuary, his operating headquarters, and his real link to the outside world. It’s where he reads internet news updates, researches technologies, and maintains email correspondence with friends, all through an adaptive program called Window Eyes and an electronic refreshable Braille device with a row of little silver dots that are constantly reconfiguring themselves under his scanning fingers. STEVEN: I just leave the monitor off because I don’t look at the monitor at all. I can’t see it. I can tell here that I’ve got it open and I’ve got my email files in front of me and I can tell that from my refreshable Braille keyboard. I have a printer here, but I don’t use that to print text. I connect to an embosser, which actually prints in Braille, over here to my left. The equipment I have here I got with help from the state for my Braille refreshable cells. This is an example of some Braille form the embosser. It basically looks like a white sheet of paper but it’s got tactile dots all over it. AARON: Steven says that every once in a while he can still see traces of lights in his left eye – the headlights of a passing car at night, or the flashing lights of an ambulance. He says he was able to make out some fireworks last 4th of July after they were carefully pointed out to him. He glimpsed the light of the full moon recently; saw light from some Hanukah candles not too long ago… And when you hear him talk about these fleeting images – and the memories they represent – you really have to start to wonder about just how well the rest of us might cope in Steven’s shoes… AARON: Help me understand what it’s like psychologically to be born missing one of your senses and then come to a realization that you’re going to lose another one of your senses? STEVEN: Basically, I’ve had some frustrations. I’ve had to be more careful. I miss seeing pictures. I miss being able to just read normally, the way I had. I used to look at photos of my old friends and so forth. And really now it’s a case of waiting for a cure, and I’m very patient, and I’m just waiting for hopefully a cure for my vision. AARON: I just want to thank you again for sharing your life with us. It’s been really great meeting you, and I thought you were an impressive person when we communicated by email, and I think so doubly now that I’ve gotten to meet you in person. Thank you. STEVEN: Thank you. |
