Leslie Peterson, DeafBlind Advocate Transcript
Legacy Oral-Visual History Interview with Leslie Peterson
This interview with Leslie Peterson (LP) was conducted for the Commission of Deaf, DeafBlind, and Hard of Hearing Minnesotans’ (MNCDHH) Oral-Visual History Project. This interview took place on June 23, 2010. The interviewer was John Lee Clark (JLC).
Leslie Peterson was a DeafBlind community leader with many years’ involvement in the Minnesota DeafBlind Association (MDBA) and long-time experience as its parliamentarian. This interview was recorded about a week before his death from lung cancer (although he was a non-smoker) on June 28, 2010.
The interview was conducted in tactile American Sign Language (ASL) by DeafBlind interviewer John Lee Clark. Clark asked questions directly of Peterson through tactile ASL. At first, Peterson signed his responses without maintaining contact with Clark, but for most of the interview, Peterson and Clark communicated by signing into one another’s hands. Two cameras were used to record the interview, so there are two concurrent images shown in the video.
There were two interpreters present on-site for this interview. Paul Deeming sat on Peterson’s right so he could tactically interpret between Clark and the directors and camera crew. He played no part in the exchanges between Clark and Peterson. The second interpreter, Rubin Latz, provided a running interpretation of the interview for the director.
The interview was translated from ASL into English using a free English translation and was transcribed by RID Certified Interpreter Patty Gordon (CI/CT, NIC; Advanced, EIPA 4.7) and RID Certified Interpreter Cori Giles (CSC). Initial translation was done by Patty Gordon in May 2011. Translation questions were reviewed by Cori Giles, who specializes in working with DeafBlind people and also has a history of working with Leslie Peterson. Cori’s review was done in early June 2011, and her notes were incorporated into the final translation in late June 2011.
Mr. Peterson was quite ill at the time of the interview, and consequently his mental and linguistic capabilities were impacted. Because of Mr. Peterson’s health, parts of the interview were untranslatable; translation notes help guide users through these parts of the interview. Mr. Peterson passed away shortly after this interview, and therefore it is not possible to consult with him on the accuracy of the translations.
This transcript is based on the written English translations provided by the Certified Interpreters. The video does not include voiced English translations by interpreters or open captions, as there were concerns about how to do justice to the signed information presented in this unique and sensitive interview. It was felt that this transcript was the most respectful way to provide English translations of the signed information.
Actions are in brackets. Translation notes are in parentheses and italics (using the emphasis font), and they represent guesses at intended meaning or comments about the intelligibility of the message.
Transcript of Interview with Leslie Peterson
Key to names:
JLC = John Lee Clark (signs in tactile American Sign Language)
LP = Leslie Peterson (signs in tactile American Sign Language)
[John Lee Clark is sitting with Leslie Peterson for the interview.]
JLC: Hi, I’m John Lee Clark. I am DeafBlind and will be talking today with Leslie Peterson, who is also DeafBlind. I will be asking him questions about his life and experiences. Mr. Clark was the first President of the Minnesota DeafBlind Association, and I hope to ask him more about that, capture his oral history.
LP: This chair feels funny - I’m going to topple right out of it.
JLC: [Laughing.] OK, are you ready for your first question?
JLC: Tell us about your early life, about your Usherʼs Syndrome, being DeafBlind.
LP: You mean about being diagnosed with Usherʼs?
LP: Or just Usherʼs Syndrome?
JLC: Usherʼs Syndrome.
LP: Oh - OK. It’s a very strange story.
JLC: You don’t have to sign tactilely with me, you can just sign. I have an interpreter here.
LP: Oh - OK - it’s a very strange story. I went to the doctor because there was something wrong with my eyes. So I went to the doctor for an exam and the doctor said that I... that I had… ummm… it’s hard to remember. He told me that I… that I had… let me think… that I had Usherʼs. But I thought that my eyes… no, no, that’s not it…
JLC: Say that again.
LP: Let me think… No, I’m thinking of the wrong story. I need to back up, but it’s hard to remember.
JLC: Who was the first DeafBlind person you met?
LP: The first time I met a DeafBlind person… hmmmmm… I first met, well… I’m DeafBlind… there were no others, until [John interrupts].
LP: OK… ummmmmmm, It’s hard for me to think in clear order because (I’m going back and forth in time).
JLC: That’s fine. We can move on. You can talk about whatever comes to mind.
LP: Yes… I’ll be jumping back and forth, but anyway… when… when… I’m sorry, my arms are shaking, so it’s hard to be clear with my signing, OK, the doctor….Oh yes, now I’m thinking better. I was dating a girl and we became engaged. Her mother started to suspect there was something wrong with my eyes. The family was upset about this, afraid there was something wrong with my eyes. (In reality, he started losing his sight at age 14, so he was not dating the girl nor engaged when he went to see the doctor about his condition.) I didn’t think there was anything wrong. But I said ok, I would go see the specialist. I’m sorry… the doctor… doctor (someone unclear who) went with me. And the doctor examined me and told me that yes I had sick eyes. Well, I thought, that’s no big deal. Then my doctor sent me to another doctor who looked me over and they confirmed I did have something wrong with my eyes. I thought, oh - well, it will be alright. It will be fine. When I went back to the doctor for another exam and they looked really sad and I wondered why they were so sad, because it was nothing… I kept on going. Anyway, some history… a boy threw a basketball and hit me on the head. I fell to the ground and blacked out. I came too, but it hurt a lot. And I kept going. Anyway, many years later. I’m confusing myself jumping back and forth… let me think. Back to the doctor being sad. They knew it was bad, but I thought it was nothing - I was pretty stupid back then. I didn’t know anything, I just felt that sometimes things just happen in life. I just didn’t understand it was serious until much later when I noticed I was having trouble seeing at work. Then I started to get nervous, started thinking about my future - how I would work if I became blind, even where I might work. It was hard to predict what would happen. I hid my feelings for a long time, but I was having an emotional response, not like I was before. It was a long, long process of working through the grief and getting to acceptance, but I made it through. That’s it.
JLC: What did you think and when did you meet another DeafBlind person?
LP: Say that again…
JLC: When did you start to meet other DeafBlind people?
LP: When did I meet people and get emotional? Is that what you asked?
JLC: No, when did you meet other people like you. After finding out about everything and going through that, when did you meet other people who were the same as you?
LP: That’s a tough question. When did I meet (people who were different)? Really I didn’t know any for a long long time. No-one. I didn’t know anything. Until I went to several workshop and then I finally got it. And that made it easier to accept.
JLC: Who was presenting that workshop?
JLC: Or what was the organization that sponsored it, where was it held…
LP: Hmmmmmmm, no… no…
JLC: Maybe you remember about the peer counseling program? Can you talk about that?
LP: Let me think… ummm… I can’t remember.
JLC: That’s OK. How about In-Touch… do you remember In-Touch?
LP: No, I don’t.
JLC: Do you remember how MDBA (Minnesota DeafBlind Association) got started?
LP: (We’re just talking? Is that what you ask?)
JLC: Go ahead and tell us about MDBA.
LP: M-B… M… really I’m very confused.
JLC: Ok - you were President of MDBA - how did that happen?
LP: Hmmmmm [long pause] nope, nope.
JLC: Do you want to take a short break?
LP: No, no, let’s keep going. I’m just trying to dig through all the boxes in my head so I can find the memories.
JLC: Ok, how about we try it this way. Instead of me asking you questions, why don’t you see what just pops into your mind and talk about that. How about that?
LP: I think I’m just blabbing until I find what’s in the boxes. I mean I it’s hard to tell a story without that.
JLC: Ok… well, do you remember getting any assistance from SSB (State Services for the Blind) in the past?
LP: Help… SSB… no…
[John is interrupted by the other interpreter - Paul Deeming - to have him take a break to talk interview strategies.]
JLC: Ok - we’re going to take a short break now, ok?
(John indicates he thinks Leslie is just having trouble organizing thoughts and that may be more of a problem than the stories themselves - or the stories aren’t as relevant to him any more - they strategize to allow Leslie to be more free form - although if the story gets complex, Leslie might confuse himself. John thinks that Leslie might find it easier to talk about technology because Leslie is a big tech person.)
[Interview restarts at time 21:20.]
JLC: Ok, we’re going to start again. Tell us about the role of technology in your life, what has changed over the years, what works for you, Braille machines, other equipment. Tell us about that.
LP: (So how I learned to use Braille?) Um…
JLC: Did you used to use a TTY (teletypewriter or text telephone)?
LP: Yes I had a TTY - back when I could still read a TTY! My wife was first my wife got one first, the 7th one one. I got a braille one, the first in MN history I loved using that - just loved it a lot.
JLC: Ok, then later, do you remember your first computer?
LP: You want the name of the computer?
LP: I think it was a TTY modem 28.
JLC: Did you like it?
LP: Yes, I did. It was an improvement but there’s always something new coming out (or) I liked it best but now there’s new technology.
JLC: Why did you like the older technology better than the new?
LP: I liked being able to type. It’s hard to remember.
JLC: That’s fine. What was your job? Where did you work? You said before you were working - as a draftsman, right?
LP: Spell that word again.
JLC: Draftsman - an engineer, right?
LP: Spell it again.
LP: Draftsman, yes. But that’s got nothing to do with the TTY.
JLC: Right, it’s a different question. I was asking about your work history, wondering about that.
LP: Ok, yes, I used (to design electric circuits for TTYs), not for business but for person-to-person calls. I think… well, that.
JLC: Who did you use the TTY with the most? Who did you call?
LP: Let me think, yes, I was the 8th, 8th person to get a TTY. My wife got one 1st, the 7th and I was 8th, the 8th. I’m trying to think of who I talked with the most… I think it was Wanda… Wanda Rosa.
JLC: Yes, Wanda Rosa. Is she DeafBlind?
LP: No - I think - no, lived nearby, she kept in touch and as we talked we became close. I got to know her better and better. Communication is very important to me. I got to know her very well. She also encouraged other DeafBlind people to use the TTY. Until… until… I’m struggling with signing because I can’t really feel my hands touch… it’s hard for me to connect signs that require contact. OK, anyway… I tried to encourage other DeafBlind people to get TTYs but it was frustrating because of all the different newer models - not all of them worked the same. It was confusing. And you know technology is always changing all the time and the newer technology doesn’t always work for us. We lose touch and it’s harder to communicate. It makes me sad that we aren’t all using the same thing any more.
JLC: Do you think things will get better as time goes on?
LP: Oh yes, things are (will get) better - it takes a lot of years to have things work out.
JLC: I’m sure. So, do you have a group of friends you see regularly?
LP: Oh yes, we made connections but it was a lot less. Set up new ways to communicate, it made it hard to connect because of the new technology (he’s probably referring to pagers and video phones but does not state it overtly) got less as the TTYs changed. Again, it made it hard to connect with (new) friends. There are many DeafBlind, all using different communication. I have fewer friends, just old friends. But I guess that’s normal.
JLC: Yes. How did you learn Braille?
LP: I first learned Braille on my own. I liked the… wait, no… yeah I had to be brave and accept the challenge - I was going to become DeafBlind. Let me think… [Adjusts his leg.]
JLC: Are you in pain?
LP: Yeah, I just had to adjust myself to get more comfortable.
JLC: Do you want to take a break?
LP: No, no.
JLC: You were talking about how you learned Braille. How did you learn to use a cane? Who taught you?
LP: [Adjusts in his seat. Speaking to John.] You OK?
LP: I learned they had a DeafBlind catalogue. I knew I would be blind, which I accepted. (He probably means he learned about deafblindness from Caroll Vetter but is having trouble recalling and producing the name correctly.) I had to think about my future. My doctor and nurse… my doctor was Carol Vetter, Last name… Carol Vetter yes… Catalog. Is that right? No… I’m spelling the name wrong, it’s Caroll. She was surprised that I didn’t cry when I found out about my disease. But I knew it was all right, and meant to go ahead even with the blindness. I think… I think… it’s hard to think. I don’t know how things went, I don’t know how Ca… let me think (tests a name sign on his chin) OH yes! At that time (signing letters “CV” on chin - meaning Carol Vetter) was a d… u/v… c… d… u/v… c… oh it’s hard… but it’s the same thing as Voc Rehab. Anyway she… she… really I don’t know how I got through that time, it’s a blur. But I believe God helped me make it through. I took Braille lessons. Yes! Yes! OH! I know, it was Sue… Sue Va… Sue… It was way back a long time ago she worked at VR, with Carol Vetter here. She surprised me (unintelligible) and we talked a lot. I met Sue at the University and that’s how we all got started. But that’s how I met her and got started. But later she brought in someone from DVR (Department of Vocational Rehabilitation), DVR… a man from Vocational Rehabilitation… oh and I forget his name. His father was higher up in VR… what was the name? Rub… Roger? Rogouf? (He may be thinking of Rubin Latz.) His father was the president at DVR. And things just went from there with Voc Rehab. Things got fast and DVR just grew and grew.
JLC: I know you’ve used a cane for a long time. When did you start using it?
JLC: No, the white cane…
LP: I thought you meant “cancer” - it’s spelled almost the same
JLC: Yep. [Laughs into Leslie’s hand.]
LP: Ahhhhh - well you scared me there for a second - shame on you!
JLC: Funny - so anyway - tell us about the cane.
LP: Yeah - it is good for steps, up and down, and moving around in general. It makes it much easier. It’s a good sensor - provides me with a lot of information. I love my cane, really.
JLC: Mmm-hmm - so when did you start using it?
LP: Years and years ago.
JLC: Do you have any weird stories about the cane?
LP: Weird stories, yes I guess so. I think… well (as a sensor), it may be weird, but it is a good tool.
LP: Just that.
JLC: Who was your favorite O & M (Orientation and Mobility) teacher?
LP: Janet… umm… Janet… (repeats to himself a few times) let me think… I know her first name was Janet… and her last was… Janet… Oh man, I’ve lost it.
JLC: That’s fine, tell us about Janet. Did you work with her here?
LP: Well, I don’t really know where “here” is right now… but anyway, she’s a family doctor but used to teach O & M. Then she decided to go to college… she decided to become… she went to college to work in Voc Rehab. She was so bright, picked up things like sign really fast. She has quite a spirit (great animal doctor?) and then became a physician. She’s my doctor.
JLC: [Laughing.] Wow… OK, I wanted to ask you about the MDBA (Minnesota DeafBlind Association) meetings. Was the Parliamentary Procedure process difficult?
LP: No, I know nothing about (politics) I’m in the arts. I used to be a janitor. Weird, huh? [Laughing.] Anyway, I became a janitor, then changed again and again, maintenance, cleaning, washing things. Changed to maintenance, then changed again, a lot of changes but mostly cleaning by hand. We found I was good at working with my hands. No (fingerspelled something unintelligible, something about boxes - the reviewers believe he is revisiting a job evaluation done as part of the VR services, trying to determine the best career for him as a DeafBlind person) I was too disabled to do my job any longer. Had to start looking at job options. Vocational Rehab was looking too. We had to do job evaluations. I told them I wanted a particular job that involved typing, but the work evaluation didn’t have computer keyboarding included. I told them what I wanted, but they didn’t get it. The tested me on cashiering (accounting?). I got it and then they changed to an evaluation for a janitor’s job. It was hard, so many changes… (unintelligible fingerspelling - may be the word animation), (typing and/or filling out forms), then changed again... trying to find the right job. Other evaluations for me as a blind person were about packing boxes, other ones seemed to be good, but they stopped and that was that.
JLC: When you became president of MDBA - you had to learn Parliamentary Procedure. How did you do that?
LP: Oh - say again.
JLC: Oh - yes, well, it’s about running a meeting. When you were President, how did you learn to manage meetings, voting and all that?
LP: You mean, how did I recognize and make changes at MDBA?
LP: It was tough, tough… a miracle. Let me think… It’s a long long story.
[Leslie rolls - John moves in - Paul interrupts with the sign for “Hold.” Adjustments are made to the filming angle and frame. John then tells Leslie he (John) needs water and asks if Leslie wants some - Leslie says yes.]
[Interview suspended at time 55:20.]
[Paul signs “Wonderful job” to John.]
JLC: I’m trying my best, trying to find a way to keep him engaged.
[Paul laughs and signs “Great (work).”]
JLC: You ready to start again?
JLC: You ready?
JLC: Ok - You were saying that MDBA was hard but also a miracle - tell us more about that.
LP: Say again…
JLC: You were saying that MDBA was a miracle, right?
JLC: So tell us more about what you mean by that.
LP: You mean how hard became a miracle?
JLC: I want to know more about MDBA and the changes, the ups and downs - just what you remember.
LP: Got it, got it. It started… man, having to work to remember. Ok, ok, I hope I haven’t lost trace (possibly means lost track) ok… I’m not sure of the timeline… but first president of MDBA - found that box and am slowly getting it open. [Pause.] I’m thinking… Several people from the Board asked God to help show them how to get started. I think they thought they were praying in secret, but I saw it. They were praying to God to help us start MDBA. Darn, lost it… Then a wealthy businessman joined - as if our prayers had been answered. I listened and learned as they prayed. I don’t know the name of the wealthy business man. He decided to donate money to pay for wheelchairs. So we started a three year program. It grew from that. It was hard going. But we had faith and were determined we would continue. So… I is thinking. Not lost, just thinking…
JLC: That’s fine, if you don’t remember what happened next, you can just skip ahead to something else.
LP: Ok - maybe I died and didn’t know it! Ok – Ok, Gerald Underdahl who was DeafBlind and in a wheelchair, managed things as the money ran out. Wow, it was tough… we got to the point where there was only a little left and 3 people, I think, but we wouldn’t give up. Then we got a grant - 3 - I’m not sure where the money was from… MDBA got a grant from the government for 3 years. So we kept on - but the money was always fluctuating. So the DeafBlind community got together to lobby for funds and we got more money so things were better. Things were fine – fine… (ummmmm)
JLC: Do you think MDBA is important?
LP: Yes, very. And growing… I see how important it is. I learned so much from them - yes, MDBA is very important. But do others recognize that? I have my doubts. I can only hope it continues and people become aware of how important it is.
JLC: Yes. You mentioned that the money almost ran out. Why is that? What was the money being spent on?
LP: I wasn’t on the Board, but my memory says that something - almost ruined the organization. Like someone punched a hole in a box and it all drained out. But I didn’t see where the money actually went.
JLC: I heard it was hard to find volunteers and interpreters during that time, is that right?
LP: I’m not sure I understand.
JLC: Well, you know how MDBA needs interpreters and SSPs (Support Service Providers) for meetings and workshops? In the past, how did you find people to come to work as interpreters or SSPs?
LP: We felt comfortable depending on how much the DeafBlind community was involved or not. I think some of the problems were when the government had their own ideas that conflicted with ours. We were stuck with them in control and we wanted them to leave it all up to us! We knew we could set goals that would make life better for us.
JLC: Do you have an example for us of a time the government was making decisions for you?
LP: Wow, that’s tough - it was a long, long time ago. I think they wanted us to… they wanted us to use our funds to pay for interpreters for AADB (American Association of the Deaf-Blind). Made it a requirement of the grant. Maybe we could have used it for something better… who knows.
JLC: I understand. I remember that there used to be lots and lots of really boring workshops that we didn’t want, but the funding agreement said we had to have workshops. So there’s one conflict.
LP: Yes, we had our own dreams and hopes but (hearing and deaf) people would not let us be in control and kept doing things “for” us.
JLC: Did you go to AADB events? Is there anything you remember about those conventions?
LP: Yes, I remember… say it again?
JLC: Do you remember any of the AADB conventions you attended?
LP: Another long story. They elected me as President (or possibly: we elected a president) so we could take control and make our own decisions. If they were wrong, we could change them. If we were still wrong, we could go to the president and ask for help to manage things. We got pretty weak anyway. I wasn’t involved, I wasn’t on the Board at the time.
JLC: Do you remember when Minnesota hosted the national MDBA convention?
JLC: Were you involved?
LP: You mean being president of MDBA?
LP: Wow, that IS a long one. You sure you want to hear me yammer on that?
LP: Wow… okayyy Washington State. They had 4 (parliamentarians - do you understand my sign I’m using?) in the state. That’s why I learned - from when I was in Washington DC. Then I joined the Board for a year… it motivated me to become a board member for a year and then they elected me President. It was great… and I had great support. There were 3 other DeafBlind people who knew parliamentary procedure (or possibly he means the word “policies”). So, after the meeting, they took me to another room and talked to me about how to run a meeting. It was frustrating because the Washington Association of DeafBlind only met every three months and I changed it to a monthly meeting. Every 6 months we had a recreational activity. Then alternated with business meetings and… it’s hard to remember, but we scheduled stuff 6 months at a time. We were such a small community. Everyone had their own ideas and I tried to support them. It went well. Some people always seemed to cause some chaos, but overall it went pretty well. When I moved back MDBA was different, much more contentious and the business meetings took a long time. I gave up, but they still can get better, well see how things go in the future. They need someone to take some control and then things can get better.
JLC: Ok, what other comparisons can you make between Washington and Minnesota?
LP: I haven’t gone to MAADB (AADB, American Association of the Deaf-Blind?) for a long time - I missed 1997… others too, I think.
JLC: You moved to Seattle for a while, then came back to Minnesota. Tell me about that.
LP: Moved… ?
JLC: I want you to talk about moving to Washington and then back.
LP: Oh - ok. I moved back because my wife was having financial difficulties and I came back to support her and my daughter.
JLC: So are the DeafBlind communities different here and in Washington?
LP: Let me think - oh, so the DeafBlind community there and then comparing to here? Yes, they are very different.
JLC: Different in what way?
LP: Here, there’s a lack of good policy. I can’t do anything here… I gave up.
JLC: What other differences do you see?
LP: Really, that’s it.
JLC: Are the services for DeafBlind people different in the two places? Things like SSPs (Support Service Providers), equipment, things like SSB (State Services for the Blind)?
LP: I’m sorry, I don’t know, but it was difficult to change back.
JLC: Ok, I have another question for you. What can you tell me about when SSP services started here?
LP: You mean when I moved?
JLC: OK, OK - are SSPs important?
LP: You mean when I moved back?
JLC: No, no, I’m done talking about Washington, this is a new question. I want to focus on Minnesota. The SSP services here in Minnesota. Do you like the services here?
JLC: No, I’m asking about support service person… the one who goes with you in the community, to the store and things.
LP: I remember when I came and talked to the President and found out about all the changes, I was shocked. But I knew I couldn’t do anything for them.
JLC: Who’s your SSP? Who’s your favorite SSP?
LP: You mean here?
LP: Hmmmm - I don’t remember.
JLC: Fine - but do you think SSPs are important for DeafBlind people?
LP: Again please…
JLC: Are SSPs important?
LP: Are SSPs important?
JLC: Yes, that’s my question.
LP: Yes, I think they are all important.
JLC: What have you used SSPs for?
LP: It’s hard to say. I think what young people and old people want is different. I don’t know what the younger people want.
JLC: What does someone your age want?
LP: What did you just spell?
JLC: I was wondering not what the younger people want but what you want.
LP: Well, business meetings regularly. More frequent business meetings. I know DeafBlind people don’t like business meetings but they are important. I don’t know what they want, but I know we need more changes to meet, discuss, make decisions and then we can succeed, I know it. Man, I’m crashing… (He literally signs a plane crashing, meaning a metaphoric crash.)
JLC: Ok - well, thank you and we’re going to take a short break now.
LP: OK - what?
JLC: We’re going to take a short break, you rest, ok?