Susan born 1953 a "high partial" whose parents actively rejected her using a white cane

My friend Susan who was born with retinopathy of prematurity and had 20/400 and 20/800  she is effectively mobility visually impaired – perhaps that cutoff is 20/500, so by 100 ? that’s a lot of stress. Susan and I met because she was the interim director of a program that I was hired to take over, she was the boss, and then I became her boss- e.

Susan’s life experiences are as a “high partial” someone considered having a lot of vision at the school for the blind, and not so much at home. It’s a tough place to reside. – I really think this interview is raw, inciteful and worth a listen.

 Wow- she really never understood that it was her right as a human being to be able to feel safe – she began telling us that to get about she held her mother’s hand and she wasn’t allowed to travel alone until freshman in college or 16 -either way – all related to the other problem of her parents not wanting her to use a white cane – so as to attempt to conceal her visual impairment. That’s a rough way to grow up- 

I wish we could all just allow blind and low vision human beings to feel safe from the start.

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Transcript

 Susan, recorded on 12/11/99

 My friend Susan who was born with retinopathy of prematurity and had 20/400 and 20/800  she is effectively mobility visually impaired – perhaps that cutoff is 20/500, so by 100 ? that’s a lot of stress. Susan Hart and I met because she was the interim director of a program that I was hired to take over, she was the boss, and then I became her boss- and she was much older than me.

Susan’s life experiences are as a “high partial” someone considered having a lot of vision at the school for the blind, and not so much at home. It’s a tough place to reside. – I really think this interview is raw, inciteful and worth a listen.

 Q. Um, state and spell your full name.

A. Susan.  Do you want me to spell it?

Q. Yes.

A. Susan.

Q. Date of birth.

A. October 16

Q. Where were you born?

A. Harrisburg, Pennsylvania.

Q. And where do you live now?

A. In Warwick, New York.

Q. And what do you do for a living?

A. I’m a vision rehab, um, specialist.

Q. Where did you go to college?

A. Undergraduate was Kutzstown State College in Pennsylvania and graduate was Hunter College of the City University of New York City.

Q. And what’s your highest degree?

A. Pardon?

Q. Your highest degree?

A. Master’s.

Q. How long have you had a vision impairment?

A. All of my life.

Q. What’s the name of it?

A. Retinopathy of prematurity.

Q. And what’s your acuity?

A. Uh, right eye is 20/400 and left eye is 20/800.

Q. When did you first realize you were visually impaired?

A. Oh, that’s a good question.  Um, hum, I think probably at the age of five.

Q. Um hm.  What, what happened?

A. Uh, when I went to, um, Overbrook School for the Blind in Philadelphia, um, I realized that, um, there were children who couldn’t see at all, that were totally blind and I could see, but I knew I couldn’t see like my brother and sisters. So, I kind of knew that I was visually different.

Q. Um hm.  Uh, was your travel restricted in any way?

A. Um, at what age?  Any age, or…

Q. Um hm.  Yeah.

A. Oh no…  I had enough usable vision that I…residual vision that I could play freely without any difficulty.

Q. What are your childhood memories of traveling, riding bikes…?

A. Um, I knew that I always used to hold my mother’s hand when we went out together.  Um, my father, uh, treated me just like my siblings and told me that I was going to ride a bike and put me on the back of a two-wheel… two-wheeler and gave me a shove.  And, um, I rode a bike.  And I think that was around age seven or eight.

Q. What about public transit?

A. I didn’t start taking buses or anything like that until, um, I was like a junior in high school.

Q. Um, at that point, were you taught how to do it, or…?

A. No.  [laugh]  No, it was just, um, you know, go with a friend who had experience, um, you know, something like that.  I never really had any formal mobility, um, training at all.

Q. Um, and what about traveling by yourself…places…

A. I wasn’t allowed to go anywhere by myself until I was probably, um, a freshman in college.

Q. And, why was that?

A. Uh, I was…  Well, I shouldn’t say that.  That’s not true.   Maybe, um, 16 or 17, I was able to go to the mall by my mom and dad’s house.  They were pretty overprotective.

Q. Um hm.  Was that with your brother or sisters, too?

A. No, just pretty much with me.

Q. And how did that make you feel?

A. Well, I know that it made me feel angry and I, I remember very vividly my first experience of wanting to be able to go out by myself like they did and, um, I was actually at the beach with my mom and dad and sisters and brother and I wanted to go to the boardwalk but nobody was ready and my parents weren’t going to be going for a really long time and I didn’t want to wait for them.  So, I told them I was going by myself and they really got bent out of shape and said, no, you can’t go, and I said, yes, I’m going.  And, um, and I stomped out of the house where we were staying and I went to the boardwalk and my mother told my father to go after me and my father said, no, let her go.  And my mother was, like, a nervous wreck…she was crazed.  But, I really did very well, um, because I knew that I had to…even though I had no formal mobility instruction, I knew that I had to devise a way to, um…now we know it as a landmark, but back then I didn’t call it a landmark… But I just knew somehow that I needed to, uh, pick a place that I would know so that when I got to that place, that that’s where I needed to turn left to go towards, um, the house where we were staying.  And, um, I was gone for hours by myself and I had the best time walking up and down the boardwalk in New Jersey…it was the best time I had.  And I came back around ten o’clock and my mother and father were pretty cool about it…they didn’t yell and scream, the just said, did you have a good time, and I said, yes, I had a great time.  And, I guess it was really kind of the beginning of my independence.

Q. How old were you?

A. Fifteen.

Q. Um, so you never had any mobility instruction?

A. Um, not, not a lot, I wouldn’t say.  Um, I, um…  When I went to Syracuse University in the summer between graduating from high school and my freshman year of college, um, there’s a program hosted by New York State and, um, they taught us how to take notes and, kind of like a pre-college program…

Q. Um hm.

A. …and I went to this pre-college program and, um, that’s the first time I had…was given a cane and I was taught two-point touch and I had to, um…  I was blindfolded and I had to find my way back to, um, campus from, um, where I was dropped off and get myself back to the dorm.  And I did pretty good with it.  I was very surprised.  But, basically, at Overbrook, because I have a lot of usable vision…the kids that were quote high partials really…  We were cleared if we…  You know, it’s funny, but, um, the way we were cleared is if we…  We were given a place to go and then the mobility instructor followed us and if we got there safely and back again, we were cleared for mobility.

Q. Um hm.

A. So, at Overbrook, I had virtually no mobility at all.  And then, um…

Q. Did you have any trouble, uh, any close calls with crossing streets?

A. Only once when I almost got hit by a bus because I wasn’t paying attention.

Q. Um hm.

A. Not because my mobility skills were poor.  It’s just I wasn’t…  I must have been off in my own little world, thinking about something else and, um, almost got hit by a bus.

Q. Right.  Um, so, did you…were…  At the school, you were considered, you know, the one who could see…the high partial…

A. Yeah.

Q. …is what they called you…

A. Um hm.

Q. …um, what was it like to be, um, in that role?

A. I think it was OK for me because, um, um, I’m a giver, so I think I fell quite naturally into that role where it was OK that people depended on me.

Q. Um hm.

A. So, um…

Q. I mean, it’s quite a difference from being at home where you’re restricted to being in the school where you’re depended upon.  Did you notice that?

A. Um, I wouldn’t say I would put it into that kind of framework.  No.

Q. Um, do you feel like, um…  How much…  I mean, how long was that training for…at the college level?

A. Six weeks.

Q. And, so, was the whole time that you were learning mobility under sleepshades?

A. No, no, no.  Just for one afternoon, you know, of here’s a cane, this is how we measure it to your, your height and your, uh, uh, your pace of, um…  I’m not using the right terms.  Um…

Q. Gait.

A. Pardon?

Q. Your gait.

A. Your gait.  I was going to say gait.

Q. [laugh]

A. No.  That’s, that’s not it.  But, yeah, so the height and the gait and then I was taught the two-point touch and, um, that was it.  I mean, it was very short but at least it was, you know, at least it was something and then I…

Q. So you were…  But that one afternoon it was all done under blindfold?

A. Yeah.  That one…  Well, I think it was some instruction so that I could watch the instructor, how they did the two-point touch and I was given the cane with the blindfold and asked to practice and then I…they did a drop off and, um, I had to get myself back to campus.

Q. So, you were to get yourself back to campus under blindfold?

A. Um hm.

Q. What was the…  I mean, did you think that served some useful purpose to this day…or then?

A. Um, I think the purpose they wanted was, even though I had very good usable vision and really was an independent self-traveler…  I think they wanted me to use the cane for identifying purposes…

Q. Um hm.

A. …but that really isn’t what came across then.  But, in retrospect, I would say that’s the only thing I can really glean from that experience.

Q. Did you start using a cane after that?

A. No.  Because my parents were very, uh, why do you have to use that?  Um, we think that, that’s going to make you a target.  And my parents really didn’t want anyone to know that I was visually impaired…they didn’t handle my visual impairment very well.

Q. Do you use a travel tool now?

A. No.

Q. Do you own any?

A. Yeah.  One.  I own a cane.

Q. Uh huh.  But you don’t…  Do you ever use it?

A. Yeah, I used it prior to my cataract surgery.

Q. Um hm.

A. Uh, in Warwick it’s extremely dark here.  I mean, you can’t see your hand in front of your face sometimes on some of these streets and the sidewalks are very, very broken up.  And before I had my cataract surgery, my night vision really got very poor so I used the cane for a couple of months just in the evening when I got off the bus.  Um, just to, to get home in a safe manner without walking into trees and poles.

Q. So, what technique did you use at that time?

A. Ah, boy, I probably say a modified two-point touch.  [laugh]

Q. So, putting it back and forth?

A. Yeah, yeah.

Q. How do you get two and from work?

A. I’m an independent self-traveler.

Q. Um hm.  Um, how do you get to and from work?  [laugh]

A. Well, let’s see, I walk to the New Jersey Transit bus stop, which is approximately two-and-a-half, three blocks from my house, and I, um, catch a bus to New York City.  Once I get to New York City, I, um, go to either the 42nd Street cross-town bus and go to Grand Central and take the Number 6 train, or, if it’s particularly bad weather, I go downstairs to…at the Port Authority…and catch the E train, um, uptown…well, Queens bound, and get off at, um, Lexington Avenue and 53rd, go up the escalator and transfer to the uptown Number 6 train and go one stop.  And then walk approximately half a block to work.

Q. What strategies do you use, um, or tips that you’ve developed over the years for, um, buses.

A. For buses…um, looking out the window for landmarks that I know…

Q. Like what?

A. Um, landmark for me would be two-way streets, like 42nd Street, 57th Street, uh, 72nd, 79th street, 86th Street…keeping those in mind.  Um, so it would be, um, I count streets, or  I keep in mind which streets are two-way, um, uh, let’s see…  The bus driver sometimes announces, which is helpful, but you can’t always depend on that.

Q. Um hm.

A. So, um, um, so I would just say, um, like, for instance, when I take a bus uptown, um, at Madison Avenue and 42nd Street, I look for the, um, GM building on Madison and 58th, and that’s my landmark to get off, um, of the bus.

Q. Um hm.  What about…  Can you see the buses, the names of them, from just waiting--

A. No.

Q. …at the bus stop.

A. No, I pretty much know…I pretty much memorize a lot of the routes.  Um, and, I’ll ask people if, if this is an express bus or is this bus making local stops and, um, I know, um…

Q. Ask who?

A. I ask other pedestrians that are waiting there…

Q. Um hm.

A. …at the stop.  Sometimes I’ll ask the driver, but not usually because they’re usually nasty and say horrible things, so…

Q. Like what?

A. Um, I had somebody once accuse me of being illiterate because I…can’t you read?

Q. Yeah.

A. You know…  And I just said, no, actually I can’t read that because it’s too far away and I’m visually impaired.  And then the guy felt like a heel.  [laugh]

Q. Yeah.

A. But I didn’t feel sorry for him, [laugh] so, no, I don’t usually ask bus drivers, unless, you know, I get in…I get a sense that, you know, if you put your fare in the box and their friendly, or whatever, then, you know, I might consider asking a question.  But, usually, um, I’m pretty much, um, let’s see what happens.  And if I, If I get into trouble, I’ll ask.

Q. Um, how will you know when you get into trouble?

A. Um, when nothing looks familiar.  Um, or for some reason I become disoriented.  Um, and, uh, but usually that doesn’t happen.  I pretty much know Manhattan really, really well, so.

Q. How do you learn new bus routes?  I mean, new ways to places?  How did you learn the way to…

A. I, um…

Q. …that you use now.

A. I ask a lot of questions.  Um, I, let’s say, for instance, if it’s going to a client’s house and I’ve never been there before…

Q. Um hm.

A. …I’ll call up the consumer or the client or, or the clients…in this case I had to find, um…I had to do a vision eval on an infant and it was in the Williamsburgh section of Brooklyn, which I’m not familiar with at all.  So, I, um, called the mom and said, you know what train do I need to take?  Do I need to stand at the back of the train, the middle of the train, or the front of the train?  What do I do when I come downstairs?  Um, and, so, I try to get as much information from the family of where I’m going before I get there.  Also, I look at the subway map and make sure that I’m getting on the right train, going in the right direction, and getting off the train at the stop I need.  And, then, once I reached street level, I just asked.

Q. Um hm.

A. …a couple of people.  And then when I got to the house, I wasn’t sure what the number was, so I took out my monocular and looked at the, um, house number.

Q. Um, what, what do you do if there’s no public transportation?

A. If there isn’t any?

Q. Yeah, to where you’re going.

A. Uh, I walk.  I do a lot of walking.

Q. Um hm.

A. I walk a lot.

Q. Um, so you have any special or strategies that you use for subways?

A. Uh, subways is pretty much, um, I know, basically all the lines…I’ve been riding the subway for about 22 years.  Um, I’ve practically been on every single line there is, um, and I, um, pretty much work out whether I need to be in the front, middle, or the back of the train and um, I guess that’s basically it.  I’ve done extensive reading about the New York City subways and stuff.

Q. About the platforms, I mean, in terms of the drop or do you have any trouble making anything out?

A. No.

Q. Boarding?

A. They’re pretty good.  The edges are pretty…because of the yellow paint that they’re using now and also the, um, tactile, um, surfaces of the platforms, I don’t usually have any trouble.

Q. So, is that…what you mean to say is that used to be more trouble?

A. No. Uh uh.

Q. So…

A. It’s been enhanced because of the awareness of the MTA to, um, meet some of the guidelines.

Q. Um, have you ever used a driver?

A. Um, hm…Yup, once in a while.  Once in a great while.

Q. Like what?

A. Well, when I used to supervise students down in Jersey, um, they would meet me at a certain point with their driver and we would go to the sites.

Q. So, you didn’t hire them, or…

A. No.

Q. How did you arrange it?

A. Always with the student.  That they knew where, what train or bus I was taking, what time I was expected, and what kind of car did their driver have?  Um, you know, ‘cause once you get…once you open the door and you sort of start going into a car that isn’t where you’re supposed to be, you learn to ask what color is the car, what kind of car is it.  Uh, you know, so…

Q. Right.  So, like, that would be, like, a parent or a family member…the student?

A. Oh, that was their driver that the agency hired for them and I just took advantage of.

Q. The agency hired for the student?

A. Yeah, for, like, some of the students that I…like Otlie and some of the other Hunter students that I was supervising.  They all had drivers.  New Jersey, um…

Q. Oh, Hunter students.

A. Yeah, Hunter students.

Q. Oh, OK.  [laugh]

A. That’s the only time I use a driver.

Q. College students.

A. Yeah, college students…

Q. …who are actually working or…

A. Yeah.

Q. …in their internship?

A. Yeah, doing their internship.

Q. Well, that’s pretty nice of New Jersey.

A. Hm?

Q. That was pretty nice of New Jersey.

A. Oh, yeah, it is.  It’s one of the only states that hire drivers and…

Q. For interns.

A. For anybody. Students or…  I mean, workers or interns.

Q. Hm.

A. And I use a cab here in Warwick when I feel lazy and don’t want to walk…

Q. Hm.

A. …and Vicky and everybody knows me, you know, and, so, it’s nice to live in a small town…be able to call up the cab company and say, hey, this is Susan, come pick me up.  You know, so, that’s kind of nice.

Q. Um, yeah, that’s pretty nice.  So, you know about how much it costs to go places.

A. Yeah, uh huh.

Q. How do they work that?

A. Anything within the village of Warwick is $4.50 one way.  Anything outside of the village then, she has a set…she has a scheduled fee.

Q. Well, that’s pretty expensive.

A. It’s very expensive, but, actually, she gives me a break.

Q. Yeah?

A. Yeah. So it’s nice.

Q. Um, have you ever been disoriented?

A. Yeah, one place I was…recently, I came up out of the subway and I thought I was someplace and I wasn’t and it took me, actually, a moment to get my bearings together.  And that I don’t like to have happen because, um, you know, I’m a pretty independent self-traveler [laugh] and when that happens, it throws me off.

Q. So, what strategies did you use?

A. Um, not to panic.  Um, that I knew I was, um, in the vicinity where I needed to be…not to panic…take a look around…did I see anything I recognize…what was the flow of traffic…um, and, um, and then I started walking in the direction where I thought I needed to be and I was right.  So, once I felt that I was right, then everything fell into place.

Q. Um, did you say to me [laugh] that your husband was taking mobility and he…he used you as a guinea pig?

A. Yeah, my, my ex…he’s an O&M…he’s an O&M’er up at the institute and, um…

Q. New York Institute for Special Ed…

A. Uh huh, and he, um, he took, um Judy Rutberg's program back in the early ’80s at Hunter College, um, for a Master’s in orientation and mobility and, um, he used to use me as his guinea pig.  Never really under blindfold or with a cane but in terms of becoming oriented to Manhattan, knowing which avenues went north, which avenues went south, um, which streets, um, went west, and which streets went east, and he would give me a starting point and, um, he would then say, I want you to meet me at so and so and such and such…

Q. Like what?

A. Um, once we, um, got off the Number 5 train at 33rd and Park and I had to meet him…I’m not sure where it was…somewhere uptown or on the West Side and he didn’t care how I got there…I just had to keep in mind…

Q. Was it another intersection or was it an actual place?

A. I don’t remember, but I do know that I had to, um, know my starting point and think about how I was going to get…what strategy was I going to use and how was I going to get to the place that I was supposed to meet him.

Q. Hm.

A. And then I had to figure out how many avenues over and how many blocks up, um, I needed to go and was I heading north or south or east or west and certainly the one that really taught me my orientation to New York City.  I don’t think I would do as well today if I, um, didn’t have that experience.

Q. And how long did you do that for?

A. Probably a semester of, of his schooling.

Q. So,like three, four months?

A. Probably.

Q. Let me hear the Wyatt.  I don’t know what his problem is.

A. What’s he doing?

Q. He’s just whining…

A. Why don’t you…

Q. …all day.  I don’t know…  We did walks, we did yard, we [laugh]

A. _______ take long?

Q. We had a nice walk out in the woods.  He’s been the playing ball.  Come here and say hello to your Susan.

A. Oh.

Q. Why are you crying all day long?  He stinks like high heavens.

A. Does he?

Q. He’s been rolling in something today…I don’t know what.  

A. [laugh] He’s my baby…I love them so much  

Q. If you would just stop whining.  Um, OK…so, now…  Do you think it would have been more effective had he taught you under blindfold?

A. Uh, no, because I’m a very visual person so for me, um, it was more effective to both hear and see the flow of traffic, to see landmarks and to make my own landmarks visually.  Um, so, no, I don’t think, for me…  Because I…we pretty much decided at that point that I was going to be an independent self-traveler.  Um, so…

Q. What does that mean to you…independent self-traveler?

A. It means that I can go anywhere, anytime…uh, without the aid of a, um, mobility device.

Q. Oh.  Um, how…  All right, how do you feel about traveling alone to unfamiliar places?

A. Oh, it doesn’t bother me…I do it all the time.

Q. And, how do you prepare for travel to unfamiliar places?

A. Um, I look a the subway map, I ask a lot of questions of colleagues, you know, have you been there, um, you know, um, is it a safe neighborhood, how do the streets run, is it a grid, um, you know, uh…  I’ll call the family if I’m not sure and sometimes I just wing it.  You know, I’ll see what happens when I get there.  I’m very verbal, so I don’t have any problem asking anybody, um, questions.

Q. What about, um, traveling alone…airports, um…

A. That’s a little unnerving for me ‘cause I’m not…  I have this thing where I don’t like to be late, um, and I would, I really get unnerved if I feel like I’m running late or I don’t know where I’m going and I get very, um, up tight about that.

Q. So, how does that have to do with airports?  [laugh]

A. Airports unnerve me.  [laugh]

Q. The do.

A. Yeah.

Q. So, what do you typically do in an airport?

A. Uh, at the ticket counter, I try to get registered, um, I’ll ask which way to the gates, um, are the gates marked well? uh…  You know, I don’t…I’m not, I’m not real…I’m not real adept at using airports.  Um, I ask a lot of people a lot of questions.

Q. Um, a lot of people…like, just other people…other travelers.

A. Other travelers yeah. And sometimes airline personnel.

Q. Do you typically identify yourself as someone with a visual impairment to them?

A. Yeah, yeah.  I’ll just say, you know, I’m visually impaired and I don’t see, uh…  I can’t read the signs.  Could you please help me?

Q. Uh huh.  And then, what do they usually want to do?

A. Um, they, they usually because I, I don’t always appear to be visually impaired, start pointing.  [laugh]

Q. Uh huh.

A. And, and, and it didn’t register that I said that I was visually impaired.  So I have to stop them again and say, wait, wait a second.  Um, I need more information about what you’re telling me.

Q. Um hm.

A. You know, and then, um, you know, it’s, uh…  We work it out.

Q. Um, how do you establish your position in the environment?

A. I’m not sure I understand the question.

Q. How do you know where you are?

A. How do I know where I am?  Um, my mind is always working whether I realize it or not.  I’m always thinking about where I am, uh, where I’ve come from, and where I need to go.  And, um, use, um, visual cues, auditory cues, tactile cues…um, all of my senses really play a key role in how I navigate in the environment.  Um, familiarity with a place, um…  All of that.  I ask a lot of questions.

Q. What tactile clues?

A. On my feet.  I have very sensitive feet.

Q. So, for example…

A. Um, a pavement, if it changes in texture.  Um, if a street is rough, you know, has a lot of potholes and stuff in it.  Uh…

Q. And, what will that tell you?

A. Just to, to really be careful and to look down.  I have a tendency of not looking down.

Q. Uh huh.

A. Um, so it reminds me to, to look down.  And also in buildings you can tell the difference, um, between the tile floor and the floor that has a rug or the floor that has a runner.

Q. And, what does that tell you?

A. It might tell you, um, where in the building you might be…depending on the floor surface.

Q. Would there be any time that you use that instead of vision?  Is that…

A. Um, at nighttime, I travel around my house in the dark.

Q. Uh huh.

A. I don’t turn on lights in the middle of the night.  So a lot of times, um, I’ll know the difference between the bathroom floor, which is tile, and the hall, which has a rug in it, or the kitchen floor, which has linoleum as opposed to the hallway which has a carpet.  So I can feel the threshold with my feet and then feel the difference in the floor surface.

Q. So you rely more on your feet than anything else in the dark, would you say?

A. I know my…I know…  I memorize, um, I memorize the layout of my apartment and, um, I use the floor surface, and, uh, sometimes I just trail, also.

Q. Um…

A. And hope I don’t step on a cat.

Q. [laugh]

A. [laugh]

Q. Have you used, do you use maps of any kind?

A. Subway maps.

Q. Do you need any kind of, um, low vision device to read…

A. No, they’re pretty, they’re pretty, um, pretty good, although I will use a magnifier if I can’t figure it out…and that’s a seven…usually a seven.

Q. Um hm.  What one thing that happens frequently when you’re traveling that you like the least?

A. Um, people think that you’re going to get out of their way and you think you’re…that, um…  Or you think that you’re…  I don’t like when people walk into me and look at me like it’s my fault.  Um, although I realize that if I had a cane, probably it would happen as much, but people, like, don’t move.  They don’t move out of the way.  Like nobody…  It’s like they want the sidewalk for themselves.  Where, if I see someone towards me and I don’t think that they’re going to stop and they’re going to keep going, then I’ll try to go around.  But some people just, like, plow and that, that ticks me off.

Q. Yeah.

A. People that are in their own little self-consumed, self-centered little world that they won’t get out of the way for anybody.

Q. Um, so, I mean, basically, you are aware of, you know, what might be an advantage if you were to use a cane.

A. Um hm.

Q. But you elect…you really feel like you…it’s not enough of a reason to carry one.

A. Right.  [laugh]  Right.

Q. Um, what about a folding cane?  I mean, have you ever thought of just whipping one out…

A. I have one.

Q. …when you need it?

A. Um, you know, just a night when I had the cataract problem.

Q. Un huh.

A. Then I really, I relied on my cane.

Q. Yeah.

A. ’Cause I really just…  That was, that was something that…when my acuity was so reduced, um, and my right eye is simply the eye that has the better vision…

Q. Yeah.

A. …and I was walking into poles and walking into trees and getting up to people, literally, almost on top of them before I saw them.

Q. Yeah.

A. So, that, I really felt was, um…  That really was the key that, I think it’s really time to have this cataract removed.  [laugh]

Q. Yeah.  Um, so at that point, were you using the cane every…all the time, or…

A. Just in Warwick coming home at night…

Q. Just at night.

A. …from the bus stop.

Q. Neat.

A. That was it.

Q. Do you belong…  Have you ever been injured when traveling?

A. Oh, yeah, when I first moved to The Bronx in 1977.  I actually was hit by a car…not badly, but, um, I didn’t…  Let’s see if I can explain this.  I didn’t realize that cars would travel under the el in two lanes.  And I didn’t expect this car to be turning in the lane that was closest to the curb.  Do you understand?

Q. Um hm.

A. And, I walked…  I had the signal for walking but, um, apparently some…  I didn’t realize that he was going to turn or that he was coming from that particular lane and, um, I, I got hit by a car.  And it just hurt…it just bruised my leg a little bit.  I was very lucky.  Um, that was my first mobility accident…pretty much ever.

Q. And you think it has to do with your vision…or was it before the surgery or after?

A. It was before…way before the surgery…but I think I had to do with my…  Oh I think some of it was vision but I also think it had to do with my not being familiar with, um, the traffic pattern under an el.

Q. Um hm.  Do you belong to any professional or consumer organizations?

A. I belong to, um, Association for the Education and Rehabilitation of Blind and Visually Impaired.

Q. Um hm.

A. And I belong to my local Lions Club.

Q. Um, what do you think drives the split between NFB and AER?

A. Professionalism and, uh, consumerism.

Q. What do you mean?

A. Um, I think that, um, um, I think that people who belong to NFB are very close minded.  Um…

Q. In what way?

A. I think they isolate themselves and don’t allow the rest of the world in, although they, you know, say they do.  But I really feel that they, um, are very self-centered and very egocentric people and, um, don’t really exist in the sighted world…or the real world.

Q. Neat.  So, you belong to, what, Division 11…  Any other divisions in AER?

A. Yeah, the kids’ one and I can’t think of what it is…Seven?

Q. Sixteen?  That’s…  Seven’s low vision.

A. Seven’s low vision…I was in low vision once or twice but I never got anything from them.  So I…  Division 11is my regular division…

Q. RT.

A. …and then, um, the TVI division.

Q. Um, yeah, I think that’s 16…______________ is 17.  Um, um, um, um, how did ADA impact you?  Do you notice a difference before and after its passage?

A. Yeah, I think the signage in he subways is much better.  Uh, um, I think it’s fabulous, I certainly can look…be riding in a train and look up now and be able to glance out the window and, because of the size of the print and the contrast of the black and white print, I actually can read subway, um, names of subway stations, um, where I couldn’t before.  So, I would say signage has really helped.  And all the gates at Port Authority…there’s large print and Braille.  Uh, I noticed that.  Um, a lot more people, I think, are announcing, um, the stops, I think…  That really…

Q. Yeah.

A. …that really has been a part of ADA.

Q. Neat.

A. So, I would say signage.

Q. Um, to what do you attribute you present level of mobility?

A. Familiarity with the area in which I live, um, motivation to not just sit around and be a lump, um…  Well, I enjoy going and doing things and I don’t want to have to wait for other people.

Q. Um hm.

A. Um, experience.

Q. Do you feel like you’d get more mobility instruction?

A. I never thought about it.  I never, I never thought about it.  I just always considered myself a fabulous, um, independent traveler and never really gave it any thought.

Q. Well, that’s…  Oh, and one last question.  What do you think about blind mobility instructors?

A. Um, I don’t think it’s safe.  Uh, being visually impaired myself, um, I personally wouldn’t want somebody who is totally blind teaching me street crossings.  Although I guess some people would say that I…that’s not fair because I really feel that I could teach street crossing because I’m a high partial.

Q. Uh huh.

A. So some people would look at that and say, well, you know, how could you, you know, say that?  But, um, no, I wouldn’t want a blind instructor, uh, teaching me.  I wouldn’t feel secure.  I wouldn’t feel safe.

Q. Well, that’s the whole thing.

A. Cool.

Q. It wasn’t too bad.

A. No, it was nothing.

Q. Um hm.  Super.

A. Yeah.

Q. Well, all right, then. I’m going to let you go…

A. All right.

Q. …and I appreciate your taking the time.  It was fun for me.

A. It was fun.  I have…I really have…  I guess…  I had the mobility course at Hunter, if you want to add that, with Martin.

Q. Uh huh.  Did that help?

A. Uh, it was interesting because, uh, Martin made me go…  You know…  Oh, no, you wouldn’t know that because you’re in the new building.  I wanted to kill him.  There was this round, round part of Hunter when we were downtown and I got in that round part under blindfold…

Q. Um hm.

A. …and couldn’t get out.  I wanted to kill him.  I’m Martin, how could you do this to me?  I thought I knew enough.  I thought I knew where I was by heart.  And, um, but it really was a really good experience and, um

[side “B” ends]

[side A]

A. …and it was very, very interesting because, literally, I came from no training at all.

Q. Uh huh.

A. _________ experience at Overbrook, and, um, Martin was just fascinated.  Really, it was a really good course.

Q. Fascinated with what?

A. I think he was fascinated in my ability to travel as well as I did without any training.

Q. But, had…  You had had that time with your ex-husband?

A. Yeah.  I mean, that was part of it, but, you know, nobody really gave me an intensive course, you know.

Q. Um hm.

A. Here and there, it was smatterings of information that I was able to put together and utilize.

Q. Right.  So, what…  He meant like under blindfold?

A. Yeah.  Anything, anything.  He just…  I think he was amazed that, you know…  He was also amazed that a school for the blind…if you were a high partial, you weren’t considered for any mobility.  And that, that was astounding to him.

Q. Right.  That’s, that’s, you know…  That’s pretty…  I mean, how do you feel about it?  Do you feel that you would have benefited from having training as a young student?

A. Um, yeah, I think so, because I don’t know Philadelphia well at all and, um, I'm going to sneeze…  I think that it really would have helped because, then, when I was young…younger…

Q. Did you sneeze?

A. No, it came, it won't come out.

Q. [laugh]

A. I was a route traveler, you know, and now I don’t consider myself a route traveler at all.

Q. What do you mean by that?

A. Where I only would go one specific route, like, only know a few places to go and never deviated from how I got there.

Q. Um hm.

A. So, I was basically a route traveler until I moved to New York.  That was a rude awakening.

Q. So, I mean, it’s confusing.  I mean, it’s like, you’re a route traveler, um, ultimately, um, you move to New York and then what happened between Philadelphia and New York?

A. Um, I met Tom and we got married and he went to Judy’s program at Hunter.  That was where I stopped being a route traveler.

Q. So, how did you learn your routes, like, in Philadelphia.

A. I went with somebody and they showed me it once.  And it was with, um, um, no blindfold or anything…visual.

Q. Uh huh.

A. And I memorized…

Q. So, who did you usually go with?

A. My friends from school.  My friend Nancy…we’d go down to, like, the music store or something like that, or we’d go to the candy store and get magazines.  You know…  But we were very, um, uh…  Overbrook was very, very stifling, um, very overprotective and, you had a certain place to be at a certain time.  If you weren’t there then you had all hell to pay.

Q. Um hm.

A. You know…so it was very restrictive.  Um, so I would usually go with Nancy or sometimes I would take my friends out for a walk and I would do sighted guide with my totally blind friends and they, you know…they would do sighted guide and we would walk to places…just very, very close to school, though.  I didn’t start taking buses and stuff until after I graduated from Overbrook.  And then I usually went with a friend.

Q. Neat.

A. Yeah.

Q. Neat.  Well, I’m pooped…I don’t know about you.

A. Well, Matt and I were at the mall all day.

Q. I bet you are wiped.

A. Well, he…  I think we both fell asleep on the bus coming home.

Q. Oh, right.

A. So, we had out little naps so now we’re, like, at the second wind.  You know.

Q. Oh.  [laugh]  That’s right.  Well, I hope, uh, it all works out for you ____________ fall asleep.

A. Well, you know what…he’s old enough now that, if I’m tired, I just tell him, good night, I’m going to bed.

Q. Uh huh.

A. ‘Cause it’s the weekend and I don’t mind if he stays up a little bit later.  But on the weekday, he has to be in bed by a certain time.  But on the weekends I don’t care…I’m not that strict.

Q. Yeah.

A. You know, Friday night and Saturday…So.

Q. All right…well, thanks again.

A. Yeah.

Q. Good speaking with you.

A. You, too.

Q. See you Monday.

A. All right.

Q. Oh, no, I won’t.

A. No, you have Queens all day.

Q. I’ll be in Queens.

A. Yeah, well, I’ll be around, so if you need me, call me.

Q. OK.

A. Bye.

Q. Bye.

Wow- she really never understood that it was her right as a human being to be able to feel safe – she began telling us that to get about she held her mother’s hand and she wasn’t Wasn’t allowed to travel alone until freshman in college or 16 -either way – all related to the other problem of her parents not wanting her to use a white cane – so as to attempt to conceal her visual impairment. That’s a rough way to grow up- 

I wish we could all just allow blind and low vision human beings to feel safe from the start.

. 

Interviewed by:         Grace Ambrose

Interview date:          12/11/99

Transcription             Lenni

Transcription Date:  2/22/01

Reviewed by:            Grace Ambrose

Review date:             9/28/2001