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Feb 06
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Going Blind & Catching Up with Peace McAllister: An Interview with Peter D’Elia

By | Emmet Teran, Updates

Going Blind & Catching Up with PEACE MCALLISTER:
An Interview with PETER D’ELIA
November 23rd, 2022

Outreach Coordinator of A Closer Look Inc., Peace McAllister,  continues Andrea Yu’s series of interviews with characters from Going Blind (2010) to figure out where they are now in their sight-loss journeys. 

Peace spoke with Peter D’Elia and his wife Peg Rinaldi, following his 100th birthday.

To listen to the interview, use the video player below. A transcript of the interview follows. To view the film, Going Blind, click here. 

PEACE MCALLISTER: Hi, my name is Peace McAllister. I’m the Outreach Coordinator for Going Blind and Going Forward, an outreach campaign based on the film Going Blind: Coming out of the Dark about Vision Loss. In the film, we tell the personal stories of seven individuals dealing with vision loss. But, today we’re specifically trying to catch up with Peter D’Elia, a then 85 year old Jersey architect dealing with age-related macular degeneration. Peter recently celebrated his 100th birthday, and with this accomplishment we thought it worthwhile to catch up with him and hear about his experiences in life and with his vision since the film. Speaking of the film, if you haven’t watched it yet, you should definitely watch it before this video as this is a follow up video. The film provides so much important context to the lives of individuals living with vision loss outside of just Peter and I think it is definitely worthwhile to pursue before getting into interviews like these.  Anyway, here’s the interview.

PM: Today here we have Peg Rinaldi as well as Peter D’Elia. Who were both featured in Going Blind: Coming out of the Dark about Vision Loss. And here we’re trying to follow up and see what’s been going with both of them since the film was made. So, it’s nice to have you, also Peter congratulations on your 100th birthday.

PEG RINALDI: Thank you!

PM: I was curious; I know in the film there is a point in time where you have a procedure that gives you a lot of your vision back. I’m curious from the film until now, how much more vision you’ve lost if any?

PETER D’ELIA: What’s happened is I’ve lost reading. I can’t read, that’s the only thing that I’ve lost. But distance is fine, I can see in the distance. And my right eye is the same as it always has been. That’s where we found out the problem was, it was my right eye. And they’ve done a beautiful job in keeping my vision so I can see. It happened just like that, I couldn’t read anymore. So, they went and had new glasses made and I had to bring the glasses to a book or a newspaper, that high, all it did was put pressure on my eye and I don’t use it at all.

PM: From the years that have passed, you could say that most the vision loss you have experienced or the effects to your vision that you’ve experienced are mostly based on the actual…on AMD itself rather than aging? Because I think a lot of times, you know, it can be confusing whether or not some of the afflictions you’re having are due to just like natural aging processes or AMD itself, but it seems like you’re saying you’ve been doing pretty well.

PD: Well the injections are working on me all the time. It’s preserving the fact that I can see distance and all and that I don’t get macular degeneration again in this left eye, they’re really taking care of it. That also happened for the New York doctor at the eye and ear hospital, he’s the one that really did the first time of giving me a shot and scared the hell out of me for a minute because of when they put that needle into you, but you never feel it. They do a beautiful job.

PM: Yeah it does seem definitely scary, I remember watching parts of the film that have the medical procedure and always wincing a little bit because I don’t know if I can do that. Do you feel like since the past fifteen years have passed do you feel like the medical treatment has gotten better or do you feel like it’s about the same?

PD: Well I will tell you that it’s about the same. It hasn’t changed, I mean the vision is good and all that, the only thing as I said, I can’t read, that’s all. That happened just overnight, just like that. I was reading real well and one day I got a book got to read and I couldn’t see a damn thing.

PM: And has the treatment gotten better like the doctors, do you feel like the medical procedures have increased in effectiveness?

PD: I did ask the doctors why, “Why did my reading go?” And there was no explanation why. They couldn’t…and no one told me why. It’s surprising, I hope that I am the first one that this has happened to. So maybe you should do a survey on has this affected someone else besides Peter?

PM: That’d be a good question for sure, do you think that there’s a chance that it may come back? Because I know Joe with his glaucoma there are days where has some sight loss that goes back and forth with days where he feels like he can do some things and days where he can’t. Do you think there’s a chance that your reading ability will come back?

PD: I would hope so.

PR: But it hasn’t happened yet though has it?

PD: No. You know they have three things, you know when you hold it in your hand and read it’s pretty hard to do because you only get a certain amount of reading out of it. You know I have another one which is larger. It’s plastic not glass and when you bring it close or away from me, it’s still very difficult to understand what it’s all about. And I was a damn good reader, I used to read two or three books at a time. And I can’t even read a scale, as an architect, I can’t even read the scale that’s there anymore.

PM: Well that brings up something…that brings up two questions for me. Are you still working as an architect?

PD: No, those days are gone forever. But, I had close to sixty seventy years of it. So, I enjoyed every bit of it.

PM: That’s wild. I think it’s amazing determination that you show in the film and also the willingness to work through the things that you were experiencing to be able to continue working as an architect through the course of losing your vision, I thought that was really inspiring.

PR: He’s very willing to give his advice on projects though!

[Laughs]

PM: The passion never leaves!

…

PM: You’ve talked about how much of an avid reader you were, do you feel like, and you also talk about in the film how you were feeling frustrated at the time…has that frustration…are you still feeling frustrated and a little anxious about the fact that you’ve lost so much vision or that you were losing so much vision at the time or do you feel like that frustration and anxiety has subsided?

PD: It’s just accepting that these things are happening, you know? And, one day I’d like to why it happens. That’s the only thing I’d like to know. No one out there ever explains to me why, and I guess they don’t know why either, or else they would tell me.

PR: I think in their own way they have described it to you, but you didn’t wanna hear it.

PD: Maybe not. [laughs] That could be true.

PM: Maybe the doctors have a little bit of separation there, maybe its just like a lack of the ability to translate which is unfortunate… Peg I had a question for you, watching your husband lose vision, I’m curious how you had to cope with that and how you’re currently coping with that and what advice you might have for partners helping people who are losing their vision

PR: It’s very disturbing because he was such an avid reader and now he cant even read the newspaper anymore and he always enjoyed that in the morning. And its happened so slowly over the years .Some days it be very frustrating to me because I can’t tell him to sit down and read a book or something, but you have to have a lot of patience and understanding what he’s going through

PM: What about you, how have you dealt with that?

PR: I’ve tried all different ways and brought him to different places like the Lighthouse and places into Boston, New England school of optometry, I’ve just tried working with him over it and understanding what he’s going through.

PD: If you could just give me something where I could sit down and read the book, I’d be so happy. I hate television because there’s too darn many commercials. So I don’t look at television too much, maybe the news or a sports program. But, still television isn’t what makes me happy, sitting down reading a book and not bothering anyone, sitting in a corner and doing things.

PM: Have you tried audio books have you used any audio books before?

PD: Funny, you’re the second person that’s told me that. And they said why don’t you try it Peter. I never tried it…maybe someday I’ll try it.

PM: Yeah it can be relaxing, a lot for seeing people use it like a way to pass time like on their way to work or like even sometimes at the gym, but even laying down or sitting down listening to an audio book if there is something you really wanna read or hear be read, it can be like a nice experience. Especially some like narrative audio books have like character voices so people will voice act the characters they’re speaking as which can add a whole new dimension to whatever book you’re reading.

PR: He wears two hearing aids and I think he’s wondering how we’d be able to hear. But if you have some decent ear pieces, I’m sure it would work.

PM: Or you could play it aloud, like if you have your hearing aids in you could play it aloud from your computer with the volume up, I think that’d probably work.

PR: Oh, okay; I didn’t think of that.

PD: I might try it just to prove to myself that I was wrong and not accepting.

[Laughs]

PD: Might be a good idea. You’re not the first one to tell me that.

PM: Speaking of audio books, that’d be a great example of potential things you’ve used to help you get past with your vision loss. Like obviously in the film there are people with seeing eye dogs, people walking with canes which Joe uses now, he uses a cane when he goes out. And then there’s JAWS which was the program that people used to read their computer to them, I was curious if you have any programs or pieces of equipment that help you with your vision loss.

PR: No he doesn’t; I’ve never heard of that: JAWS.

PM: Yeah it’s a program that some people have for their computer for the text on their computer to be read aloud to them and has probably gone through multiple iterations since the film came out but I know that I got an email from someone the other day who was using it when we were giving out Going Blind for World Sight Day. Have you ever considered…is there anything that you might want to use or anything that interests you besides JAWS, that you’re interested in using to help you with your vision loss?

PD: Oh anything! If anyone can come up with a way for me to use something to read, I’d be so happy. I mean, that surprises me too, I’m not the first one this has happened to, it has probably happened to many many people years ago. You’d think that someone would’ve come up with something really really good. Maybe they will.

PM: I had another question, that I just thought of but I think I lost it… Oh! I was curious if you felt like overtime, things have changed technologically. How you feel technology has changed to benefit people suffering from low vision or people whore blind

PD: Well, it’s hard to say what they’ve done in the time that was important.

PR: There have been so many devices…

PD: I’ve seen these whole large, big glass …its pretty frustrating I think to go back and forth like this.

PR: They also have the large machines that almost…

PD: Horrible!

PR: Since he’s not computer savvy even with the keyboard, he backs away from them. But…

PD: There have been quite a lot of things but they haven’t hit it yet. Some day they will…

PR: As far as Peter’s concerned.

PD: I’m hoping they will because if you lost your sight, its sad, and its sad… Peggy has to write a check for me because I can’t see what the hell I’m writing. And newspaper, I’ll get the newspaper, “What does this say?” I mean, its sad that I can’t find out for myself.

PR: Frustrating. You know, I’m sure overall all these new devices that have come out overtime since the film that have helped a tremendous amount of people who are maybe younger who are trying to do things and know their keyboard an all that.

PD: Just like the program that Joe did, Going Blind, so many things have they talked about on there that is true and what they’ve done with it. I think he’s done a beautiful job with what he’s been doing and should continue to do what he is doing. I had an aunt who had glaucoma and she was walking on the sidewalk and was killed by a car backing out of the driveway, she didn’t see this car at all. So, I mean these are things that we have to try and help them do. So you can tell Joe that he does a  beautiful job…you do a beautiful job.

PM: Thank you. Yeah, I think that an effort should definitely be made because obviously there are a lot of technological advancements but an effort should definitely be made to make it more accessible to people who don’t have the experience with that technology. Right now, it’s kind of isolated.

PD: Well, I’m 100 years old. My back is out, my ears are out, my eyes out, but my heart is still going.. The doctors are doing a good job.

PM: You’ve got the heart of a warrior, you should that when you were doing architecture into your 80s.

PD: Peace, they’ve done a good job for me. They had a Americans of all ages do a beautiful job appreciating my services oversees in World War II, was aboard the USS Constitution which is the oldest ship inn the navy, which I was on and they gave me big medals and all of that. And people wherever I go, in the restaurant, they buy me drinks and send things to give me a meal. It’s so nice that people respect us.

PM: I’m gonna ask you the last question I have, which is kind of a big one, so take your time answering it. I’m just curious throughout this whole journey of vision loss as a partnership and as individual people what you’ve learned?

PD: I guess, to accept these things that’s happening. I’m hoping that someday they’ll come out with the right thing for me, that’s all. It’s not their fault that I’m going blind, it just happened. But, I’m hoping that they come up with something for other people, I’m in the last stages of my life, I’ve had a wonderful life, I can’t complain. I’ve done a lot of reading a lot of drawing. I left a legacy behind me, Joe also, that my children have seen and other people have seen. I met beautiful people too because of architecture: what I did. I hope that somewhere along the line, they come up with something good. They will, it’s gonna come. Someday.

PM: Peg?

PR: I have learned that there are so many wonderful people out there in respect to the way Peter has been treated in respect to his work and the appreciation. Sometimes you just look at a house and say “That’s the way I wanted it.” But they just appreciated everything he’d done for them. And quite often re-wanted him when it was finished. And the way that he has spent the past year celebrating his birthday has been amazing again with the people that have approached him and been apart of has been wonderful. Seeing him be appreciated has been wonderful.

PD: Yeah, it’s been a good life. Can’t complain; can’t complain.

PR: I appreciate the fact that we are still  together at this age and as you said, have been able to experience this together and appreciate it and the love that’s out there has been wonderful. Doctors have commented on it and even in the hospital  yesterday one of the nurses said “I saw you on TV.” Everybody just appreciates everything. So, it’s been a good run as Peter says.

PD: In life I met some very very nice people. And as far as I’m concerned you and Joe have done a good job. Thank you for this and I certainly hope I can give you better news…

PM: Guys this was amazing, I really thank you for the call! I really appreciate you making the time for me and being able to give me your perspective.

PD: When you think about it, I could’ve gone downstairs and put a house…one of the houses…

[Laughs]

PR: Maybe he’ll take a ride out someday!

PM: We can always have a follow up call, this doesn’t have to be the only time. Well it was nice talking to you guys, the meetings about to end so I’m going to say my goodbyes now. If there’s anything you’d like to say to the people who may be watching this video.. you can say it in the next..right now!

PD: There’s nothing I can say, I’m very emotional.

PR: Very emotional right now.

PD: I hope it helps people, whatever you’re doing. That’s all I care.

PM: Thank you both.

PR: Thank you.

PM: I’ll talk to you guys later.

PM: I hope you enjoyed the interview. Peter wasn’t the first and won’t be the last person we catch up with. To listen to the others, you should check out goingbindmovie.com. There we have other interviews and information on how to become part of the Going Blind outreach. Going Blind is only one of multiple films by A Closer Look, Inc. a non-profit organization that works to minimize suffering, maximize empathy and inspire action on health and social justice issues through the use of media. To help us fulfill our mission and to hear more of the varied stories we tell, you should check out some of our other films too. Thanks for watching and I hope to see you again soon!

Jun 18
0

Going Blind & Catching Up with Andrea Yu: An Interview with Emmet Teran

By | Emmet Teran, Updates

Going Blind & Catching Up with ANDREA YU:
An Interview with EMMET TERAN
June 18, 2021

A year after the start of a global pandemic, Andrea Yu, who is a student with City Access New York interning with A Closer Look Inc., spearheaded a series of interviews with characters from Going Blind (2010) to find out how they fared through a year of COVID-19 lockdown and where they are now in their sight-loss journeys. 

Andrea spoke with Emmet Teran in mid-March about his eye care during the pandemic and his current occupations.

To listen to the interview, use the audio player below. A transcript of the interview follows. To view the film, Going Blind, click here. 

ANDREA YU: Hello. I’m Andrea Yu, host of Going Blind and Catching Up. This week, we have an interview with Emmet Teran. He has been working in politics and advocating to unionize workers. 

Hi Emmet. How have you been since the making of the film and during the start of the pandemic? 

EMMET TERAN: Hey Andrea. Thanks so much for having me on to talk. It’s a pretty broad question, but all in all, really good. It feels like it’s been forever, it kind of has for me since Going Blind came out. Since then, I went to high school, went to college, graduated in 2018, and was working in politics as a press secretary for a couple of years in Connecticut, and then just actually moved back to New York City, and have been working for Joe. So, I’ve been kind of going a little full circle in terms of where I was 11 years ago and where I am now. 

I’m helping Joe out with some grant work for his projects and helping him out on a bunch of different things, but excited to be back working with him. In terms of the pandemic, like everyone else, it’s been a pretty jarring year, but I’ve been healthy and safe. I was actually just vaccinated yesterday. I’ve had my first dose, so you know, looking forward to this being over. All things considered, I’m really fortunate. I was able to keep my job, have the support of my family, and I’m sure you’re talking with my dad, so he’ll fill you in there, too. I hope that wasn’t too much of a ramble, but that’s what I’ve been up to. 

AY: Wow, it sounds like a lot has been going on. 

ET: Yeah, you could say that. 

AY: So then, because of this pandemic, how has your eye care been affected? 

ET: A little background for me, since the film – in 2017, before the pandemic – my retina detached in my left eye, which was a scary prospect. Because I have ocular albinism, the lining in the back of my eye’s pretty thin, so the prospect of getting my vision back was pretty unclear for quite a few months. So it was a bit of a scary time in the fall 2017, but fortunately, I had a really amazing surgeon and I was able to get it back. You know, with that said, like with everything else, getting all the necessary doctor’s appointments has been a special challenge. I haven’t been to the doctor’s in ways that I wish I could have been, haven’t been seen in the ways that I’d like to, but I’m hoping, now that I’ve had my first vaccine dose, that I’ll be able to start making those appointments again and getting out now that the rates are lower and I feel safer. Obviously, I’m younger, but I’m more so just worried about hurting someone else accidentally on the subway. Now that I’ve had my first dose, I feel a little bit better about getting out there. 

AY: So then, I assume you’re adjusting to this time well with the Coronavirus? 

ET: Yeah, I mean, trying my best to. It’s been an interesting time, to say the least. Kind of moved in November after the election. I left my job in Connecticut and moved to New York to be closer to my brother. It’s been really nice being able to have him in my small pod all winter. Catching up with him and catching up with people in New York, of course at a distance, has been a challenge, just like for everyone else. But all things considered again, financially doing fine. It’s really nice to be back in New York. 

AY: Oh, that’s good. Would you say working remotely has been accommodating to you well? 

ET: Yeah, I mean, I think with everyone staring at a screen for 8 hours a day sucks. It’s definitely a wear on your eyes for people like me and you and Joe. Having low vision and having to strain in ways that we haven’t necessarily had to dedicate as much screen time as we do now, which is definitely a challenge. 

But I’ve been fortunate. I’m currently working 3 different jobs. One with Joe doing non-profit work, another one doing some content writing for a startup called Unit that helps create an app that helps workers unionize, talks them through the legal processes that they have to go through. And my last one is helping out on comms on a City Council race. All of it, for the most part, is remote. So I’ve been fortunate in that respect, but spinning a lot of plates. 

AY: Wow. So what led you to work at those two jobs? 

ET: One of my main goals in life is to write. If I’m able to do that, I’ll be happy, whatever form that can take. My politics are also pretty important to me. The impact that the job that I have in terms of what it does for people is also very important to me. 

Working for a startup that helps workers unionize and hopefully stand up for themselves more in the workplace is really important for me. Not to be too political, but we know that the declining union rates are tied to income inequality in the US. Working to bridge that gap and put more of a voice, rights, and a seat at the table for workers is so important now more than ever, especially. Since people need more of a voice, they need to stand up. 

In terms of my political work, I graduated from school wanting to go into journalism and 80 applications later, wasn’t really finding too many jobs, since it’s not the easiest industry to break into. So I started getting involved in some local political races and found myself working in Hartford for a couple of years as a press secretary for the committee chairs up there – so labor, housing, health care. Yeah, I found my way back into New York in fall in this pretty important election year with the mayoral race up and all these city council districts in play. 

AY: Wow. So how would you say balancing everything remotely is going so far then, since that’s a lot you’re handling? 

ET: It’s a challenge. Full-time job would always be nice, but you know, especially given the pandemic, things are a little bit harder to find. But I’ve been managing okay. Remote hours are a task, because there are less limitations in the way of packing up your office and leaving for the day. Your work kind of follows you home, because your work is at home. I’ve found a good way to balance it and ways to stay sane and watch movies with my roommates. Trying to find a good balance when I need to close the laptop. 

AY: When you’re in an outside environment in your free time, how have you been adjusting to these changes? 

ET: You mean COVID-19? 

AY: Yes. 

ET: You know, double-masking, keeping my distance, avoiding the subway if I can. I’m a runner, so I go on jogs. I’m sure to wear a mask and try to go in off-hours. I mean it’s kind of like anyone else. You’re trying to limit your exposure to the outside. Obviously, we’re getting a little stir crazy now that we’re pretty much past the 1-year mark on the pandemic, but now that it’s getting warmer out, it’s much better to be outside. Braving some cold walks to socially distance to catch up with people over the winter was so so necessary and really looking forward to the spring weather where it’ll be nicer to be outside. 

AY: Right, it’s refreshing. 

ET: Seriously. 

AY: Yeah. I think that about wraps it up. It was great hearing from you again. 

ET: Thanks so much for doing this project, Andrea. I’m really looking forward to hearing from all the other folks from Going Blind. The movie really had a huge impact on my life. I really wouldn’t know how to advocate for myself, if it wasn’t for Joe teaching me early about all the really important aspects of low vision therapy and all the tools and gadgets that are out there in the world. I know we didn’t talk a lot about it in this, but from my retinal detachment to even before then in the classroom, I think what this movie has done for me is really hard to describe and quantify, but hoping it continues to have an impact on others. Say “hey” to the rest of the cast for me. 

AY: Of course. Thank you for doing this with me.

Jun 11
0

Going Blind & Catching Up with Andrea Yu: An Interview with Tim Teran

By | Tim Teran, Updates

Going Blind & Catching Up with ANDREA YU:
An Interview with TIM TERAN
June 11, 2021

A year after the start of a global pandemic, Andrea Yu, who is a student with City Access New York interning with A Closer Look Inc., spearheaded a series of interviews with characters from Going Blind (2010) to find out how they fared through a year of COVID-19 lockdown and where they are now in their sight-loss journeys.

This week, Andrea spoke with Tim Teran about life with low vision and adjusting to uncertainty during the pandemic.

To listen to the interview, use the audio player below. A transcript of the interview follows.

To view the film, Going Blind, click here.

ANDREA YU: Hello, this is Andrea Yu, host of Going Blind and Catching Up. This week we talked with Tim Teran about life with low vision and adjusting to uncertainty during the pandemic. 

Hi Tim!

TIM TERAN: Hello Andrea.

AY: So you gave your story on how you adopted with your low vision. So how have you been since this pandemic started? 

TT: Well, I think because I’ve lived with low vision my entire life that it hasn’t impacted my life as much as it might others, because I don’t drive – never have driven – for example. So in Connecticut, I walk everywhere, like I walk to town and get groceries, that sort of thing. I live in both New York and Connecticut. I’m lucky. 

After the pandemic started, I think New York became a little creepy to me in a sense that everything was fine with indoor activities, and then spring-summer-outdoor activities, and all that goodness of reflecting on life and how precious it is and what it means. But at the end, I feel like being cautious sort of became wary and wary of others and their behaviors, so I found myself always looking around in public and since I don’t see so well, that doesn’t necessarily mean I know where people are. So it’s been a little odd to feel uncomfortable. If you add that to the fact I don’t see well – trying to figure out what people look like behind their mask is impossible. 

9 out of 10 times, I will go by someone who will know who I am, but I won’t know who they are. With low vision, that happens from afar all the time. It becomes exacerbated when you can’t even recognize some of the bigger details on their faces.

AY: But with social distancing now, how has that been going? 

TT: Well, there you go. That adds to it, right? So with 6 feet away, it’s hard to tell “Who is that person?” I’m somewhat comfortable in my skin in the sense that I know I don’t see well and I don’t hide it from anybody, so I’m happy to say “You know, I hate to say this, but I can’t tell who you are behind your mask.” Sometimes it feels a little awkward, because it feels a little rude. But I’d rather do that and get that out of the way, then carry on with the conversation. 

AY: Right. So now that we are all in quarantine though, how have you been adjusting with your low vision? 

TT: Well, as my wife will tell you, I spend too much time on the computer. I think we all have screen overdose from the pandemic. In that respect, I think the difference in the pandemic to me, the biggest issue for me from a vision standpoint, is it’s that much harder to recognize people, and I love people. It kills me when I’m walking down the street or I’m in the country, walking down the road and I see someone and I say “hello” just ‘cause I say “hello” to everybody, and I don’t know who it is. It’s just that it’s a little disconcerting and I kind of feel uncomfortably rude, which is why for me, the thing I’ve got to do is say “I’m sorry, but I can’t tell who you are with your mask on.” Unfortunately, because so many people can’t do that, it doesn’t become a hardship in the sense that “it’s because of my low vision, I can’t tell who you are.”

Because enough people do it, I don’t feel like it singles me out or calls me out as having a particular challenge or what have you. 

AY: Speaking of challenges, have you also been facing challenges with your work? 

TT: Well, you know, so much of my life, I have worked globally and I’ve been using video conferencing since they called it that, not Zoom, for 20-odd years. So, in some respects actually, if you have low vision, Zoom is a godsend, because you actually are closer to that person than you would be if you were in the room with them. 

In the past, I could sit across the conference room 7 or 8 or 15 feet away, but I couldn’t see their facial expressions. I could hear them, but I couldn’t read their facial expressions. Of course, I’m getting hard of hearing, that’s becoming difficult, too. Thank God for hearing aids. But I would tell you in some respects, Zoom makes it easier for me to have a call with someone ‘cause I can actually look at their faces with details that I normally wouldn’t see in a conference room or if I was seated across a table from them. 

AY: Oh, that’s good. Very accommodating them. So then, would you say you’re adjusting to this pandemic well? 

TT: Yeah, I mean the other thing that I find in a way that is a good thing is – you know, there are people who’re challenged for so many reasons and they are typically irregular, if you will. They’re not normal. It’s being challenged in our society in particular is different. It’s not the norm, as opposed to perhaps a culture where everybody is an individual and therefore, whatever you are is what you are. Because the pandemic has created a blanket challenge to everybody, people are much more accommodating, understanding, and compassionate than they are when there wasn’t a pandemic. 

Here, for example, I might go to a deli. The most hated thing is when there is a menu board, I can’t read them. When I don’t know exactly what I want it is really frustrating, because I’m saying “Can’t I try something new?” but I can’t read the damn board. Sometimes in the past, when I ask the question “What’s special today?” and they’ll say “Look at it, it’s on the board” and they’ll point above. And I’ll say “Okay, I’m not gonna ask that question again, because that’s gonna single me out and make me feel really uncomfortable and clearly they don’t want to answer.”

Now, I find people are much more accommodating and saying “Oh, well the specials today are [fill in the blank]” or “I’m interested in an omelette. What kind of omelettes do you have?” and once I look at the board, they’ll tell me. For some reason, people are feeling much more compassion about saying “Well, let me help you!” You know, there’s so many bad sides to the pandemic, but we do live in a human community and I think that challenges and disasters bring the best in people out, for the most part. And so, that’s a change for me. I’m much more comfortable saying “What are the specials?” in a store where I can’t read or if I’m in a grocery store and they have a board for the “meat specials” or the whatever specials behind the counter or are farther away than two feet in front of me. I can ask the question. I’m more comfortable, because I’m more believing that they’re gonna be okay answering the question and not feel that they’ve been put upon. 

AY: Right, so have you gotten the vaccine yet and if so how has it affected your routine?

TT: Well, I got my second vaccine yesterday. It is quite new. And it’s funny, because I went home yesterday afterwards and I was exhausted. I think it was just – the anxiety of waiting ‘cause I kept saying to myself, “I don’t know whether I’m staring into space because I have a reaction or I’m just absolutely exhausted and relieved.” So “will it?” I guess is more accurate, ‘cause I haven’t had it yet, yes. 

Our hope is to take a small trip down South to explore the Smoky Mountains, where we have never been and then I’ll feel much more liberated to do so – not that we won’t be careful to wear masks and do social distancing because that’s the right thing to do. But we’ll feel like it’s okay for us to do that. Our worry will be that – God forbid – they’re wrong and even after you get vaccinated, you carry the stuff and people who you come in contact with might actually get it from you, that would be a horror for us. But I feel more liberated than that. We’re beginning to think about, you know, as Dr. Fauci would say, is having small gatherings with other people who have been vaccinated. So there is some sense of liberation. 

I don’t think there has been enough said about people’s personal feelings and what’s been going on, and certainly for those who’re less than perfectly sighted. One of the reasons we moved to Connecticut and not stayed in New York. We left March 5th, 2020 and moved up to our house in Connecticut and went back a few times over the summer. I just found it to be anxious-provoking because I live on the subway in New York and I love it. I mean, I could do it literally with my eyes closed probably. I’ve done it my entire life, you know since the age of 8 or something like that. So to me, the city is about exploration and being out and around and obviously, wonderful museums and restaurants. And then having taken all that away from you… Those are the sights and sounds and smells and taste of what makes New York like nothing else. So that was really challenging. 

When I talked about the fact that I went from cautious to wary, you really felt that when you’re out on the streets or when you’re taking the subway. Because once you take the subway away from New York, that city is built for the subway or the subway is built for the city, however you want to look at it. Once you’re uncomfortable doing that – and it’s hard when you can’t see – ‘cause there are parts I don’t know well and trying to read the subway maps is virtually impossible from my perspective – that really just tainted my whole love of the city right now. 

I believe New York will come back. God willing, next year will be better, then we’ll have no more surges in the virus and people will feel comfortable. But I don’t think people recognize that this is a year that has taken a toll on people’s trust of others, which is why I say you get wary of others. No, New York is wonderful relative to Florida where people are just idiotic in their brazen lack of respect for other people and the way that they behave. New Yorkers, I think are pretty good, from what I can tell. I haven’t been back much lately to the city, although I’ll go back in the coming two weeks. I haven’t been back since probably November. It was just so sad to me. I didn’t want to be there. Let alone that it was just uncomfortable, since I couldn’t eat in a restaurant or I wouldn’t. It just made it too hard. Sitting outside in a restaurant, I was constantly looking over my shoulder, seeing how close were people next to me. That’s not the joy of being in the freedom of being in that city. 

AY: How is it in Connecticut, since as you said before, a lot of people have been accommodating to you?

TT: I live in a town that has extreme left and extreme-right human beings, so we have everybody from people who’re incredibly compassionate to people who still think it’s China’s fault and they did it on purpose. So I live in a very bipolar world. By in large, it’s been pretty good. It’s been isolating from the physical-social standpoint. You know, I think the guy who originally rang the alarm in 2010, I think he’s from University of Minnesota, about potential pandemics said “We should really stop talking about social distancing and talk about physical distancing, because we should never be socially distant.” We’ve tried to make a point of making sure that we’re never socially distant, but we’re physically distant. It played a toll on my family at Christmas. It was just my wife and I. Usually, we have my grown sons and their girlfriends or boyfriends or whatever the case might be, and maybe my brother and his wife, and my more extended relatives. This year, it was just my wife and I. It was fine, we made it work ‘cause we were socially near and physically distant. But it’s very hard.

AY: Yeah, a lot of people don’t get to see their friends or family as often, which is quite sad. 

TT: It’s absolutely true. Andrea, are you from the New York area or are you from someplace else? 

AY: Oh yeah, I’m from New York. 

TT: Yeah, one of the things about New York that you probably love like I do, and I’ve always loved, is the vibrancy, and that vibrancy is missing right now. There’s still a sense of wariness in the air, ‘cause people are just not sure what the future is gonna bring now. I think we certainly sit on the “dawn of arisen” of some sense of normalcy coming back and if the President is correct, hopefully by – I don’t know if by July 4th everyone will be having barbecues – hopefully by August, people will be comfortable hanging out and feeling that’s an okay and right thing to do and that will be a wonderful thing, and there will be terrific cause for celebration for being back in the saddle again, so to speak. 

AY: Right. Since this pandemic, people have been going less often to their doctors. So how has that been affecting you and your eye care? 

TT: Well, fortunately in my case, I had my last eye checkup just before the pandemic in December of ‘19 or ‘20. So I’m probably due for one now, but my situation is ocular albinism with nystagmus and astigmatism. And so, for better or for worse, it doesn’t change that much, except for my near-in reading which probably means it’s now time for bifocals again, because the more you rely on them, the worse your eyes get. But I haven’t needed to go to a doctor for that. 

AY: So basically, it seems you are adjusting well to this pandemic, and that’s really great! 

TT: Well you know, because I’ve had to adjust to a world in which I don’t see well my entire life – I think one of the things that perhaps, and maybe this is even more true for people who have not always lived with low vision but get it over time, is there is the power of adapting that you, in my case, had to learn from birth. You just weren’t like everybody else, you couldn’t see like they could. Perhaps others had to learn because they no longer see like they used to see. That allows you to adapt to situations where you’ve never had to adapt before in a more, I don’t want to say courageous way, but in a more open way. You’re not gonna fight it, because you can’t change it, so let’s adapt to it. 

So I don’t know whether it’s that people who have had to deal with significant life challenges actually do better or worse. I would imagine that they actually do better. They’re more open to adaptation. Those who have adapted to life changes in the past probably do better. Those who have not adapted well probably do worse than the person who doesn’t “have a challenge that they adapted to.” 

I’ve read a lot of stuff about change and encouraging corporations to adopt cultures of change. It’s the scariest thing on the planet, because as human beings, we’re not taught to embrace change. We’re taught to try to develop structures and routines. It’s why we have cognitive maps to reduce the challenges of getting around, and those maps are based on routines. So if you embrace change, you’re not looking to embrace routine, you’re looking to find something different that is to then incorporate that into the world. That’s a scary thing for most people, ‘cause people are taught and we’ve grown up in school and in business the manufacturing mentality of: you learn the thing, and then you learn how to do it faster and better over time. You don’t learn how to do other things. Maybe, I’d argue the only place in high school we learn that stuff is in the physical sciences, where there’s a “action and a reaction” and you learn what to do, what that reaction means. That’s not how we’re taught in humanities or in business.

AY: I never thought of it like that, 

TT: Well good, I’m glad this is something that’s thought-provoking! I mean, I’m a big believer in change, but you have to be open. You also have to be honest with yourself that says “okay, change is scary.” So either embrace it, and a lot of people don’t. There was a Winston Churchill comment that says “You have enemies? Good. That means you stood for something different.” It’s why people are stuck in paradigms, because we don’t look for information and observation as being “different” and why it’s different. We look for support it to support a worldview you have. 

It’s understandable, because without structure, you live in a world with chaos and notwithstanding the physics theories of Chaos Theory. Society needs structure. True change is destructive to structure, and creates new structures. It’s hard work and most people don’t want to work that hard. People mostly would rather keep on doing what they’re doing than doing something different, ‘cause it’s scary and they don’t know it. But I’ll circle back and say if you had to do that because you’ve had a challenge that you’ve had to overcome that you didn’t have 10 years ago, then you’re more open to change and you’re more comfortable with it and accepting and figuring out how to navigate it than if you’ve never had to do it. Which is why I come back and say I believe that some people who’ve actually had life challenges probably do better in a pandemic than those who haven’t. 

Again, the hidden thing we don’t know is the mental toll that has been put on people. It’ll be interesting and I don’t think we’re gonna know until some semblance of normalcy comes back in terms of the workplace and things like that, and the social place is to how comfortable people are engaging again. I think that it may be generationally different, because I still think the people who are in their 20s and 30s still feel, for the most part, they are Immortal, and I think people who are, whether they are Gen X or boomers, they know they’re not immortal, ‘cause they’re getting older and they obviously have experienced the fact that the pandemic has been unevenly impacting people of their ages, so will they be more or less quick to move on? I suspect the answer will be yes. 

AY: Yeah, they would have more of an understanding of what it was like, or what it is like. 

TT: And their fear factor will be high up. 

AY: Right. Well, it was very great hearing from you and I’d have to say, you’re a very deep thinker. A lot of people can learn from you. 

TT: You’re very kind.

Jun 04
0

Going Blind & Catching Up with Andrea Yu: An Interview with Steve Baskis

By | Steve Baskis, Updates

Going Blind & Catching Up with ANDREA YU:
An Interview with STEVE BASKIS
June 4, 2021

A year after the start of a global pandemic, Andrea Yu, who is a student with City Access New York interning with A Closer Look Inc., spearheaded a series of interviews with characters from Going Blind (2010) to find out how they fared through a year of COVID-19 lockdown and where they are now in their sight-loss journeys.

This week, Andrea spoke with Steve Baskis about his life since the film premiered, hearing about his global travels and recently begun education in sound engineering.

To listen to the interview, use the audio player below. A transcript of the interview follows.

To view the film, Going Blind, click here.

ANDREA YU: Hi, Andrea Yu here, host of Going Blind & Catching Up.

This week, we get an update on Steve Baskis, who if you might remember from the film, lost his sight after being hit by a roadside bomb while serving in the army. Since Going Blind premiered in 2010, he’s adjusted to sight loss, traveling around the world and climbing literal mountains. He’s also taking classes at Berklee College of Music at Boston and learning how to utilize audio programs like ProTools.

 

Hi Steve. How have you been during this pandemic? 

STEVE BASKIS: Well I was traveling quite a bit, right up until March of last year in 2020 when the pandemic kind of shut down the United States. I was actually in Dublin when the President closed all travel to Europe – at that point, around March 13th or 14th. But before that, I had been in a few other countries – to Argentina – I was climbing down in the Andes in South America. I was doing a bunch of other kinds of things. 

I was in Hawaii and Switzerland, too. I was just traveling quite a bit. And so, that came to an absolute screeching halt. I was in New Jersey with my girlfriend from March till July. I live in Western Colorado, so I flew home early July. But that whole time, and still till now, I’ve just turned to focusing on studies and going to school. 

I’m pursuing to be an audio engineer, a music producer. And so I’m going to Berklee College of Music out of Boston online. I’m just taking classes related to acoustics, audio, and working with that kind of stuff – mainly could be for film or just music or sound design. But I’m going to school for that and that’s what I’ve been concentrating on. It’s kept me sane. I mean, it’s been tough. A lot of things that I normally do have been shut down or closed, but I’ve had a good time going to school. 

AY: Oh wow, that’s great, and with all these online classes, you don’t have to worry too much about navigating to many places.

SB: Yeah, especially now I’ve already got my first vaccine shot not too long ago at the beginning of this month. It’s nice to go online. Things are more accessible. I’ve been blind for 13 years now. In May, it will be 13 years. It’s changed a lot just in a decade, so quite a bit of things related to accessibility on the web, software programs, and other things, too. It’s been amazing. Like I said, I’m not worried too much about everything. I’ve just been focused on school, so it’s kept me busy, kept me focused on something, and I’m just developing a skill set. 

I’m studying ProTools, really. Primarily the software program that’s used in a lot of recording studios all over the country – all over the world. It’s a digital audio workstation. Today, I was working on a whole band, a song, just mixing and doing all the processing for the song, for class. But yeah, that’s all what I’ve been up to really. Staying fit. I exercise a lot, you know, and I just go to school. It’s pretty much what I do. 

AY: So, what kind of music do you work with exactly? 

SB: I work with everything. I’ve been playing more now with orchestral library stuff, like Hans Zimmer or some of these famous orchestral maestros, and music producers. I use the fancy libraries that allow me to mimic a full orchestra. But I also do rock, hip hop, and just anything. I’m interested in all of it, but right now my classes are focused on specific things. This song that I’m working on is kind of a psychedelic, rock song, but I’m really open to a lot of things. Electronic, dance, music, techno to rock to rap. I really like anything, but I don’t have a big focus right now. I’m still learning a lot of technical things, you know.

AY: Yeah, just dabble in everything. That sounds really exciting.

SB: Yeah, it is. It’ll help me do stuff like, Joe. You know, make documentaries.

AY: Right. So you explore a lot in the music industry and you also explored a lot around the world. How has your vision affected your travels? 

SB: I have to be more prepared. I’ve been traveling all over the world the last 13 years and I do a lot of outdoor activities. Like extreme mountaineering, climbing, ice climbing, kayaking, whitewater kayaking. I Alpine ski, cross-country ski. So that’s normally my lifestyle and I speak about it. I give motivational speeches. I have a foundation that kind of operates in a way where we take people who have a disability, a visual disability and give them the ability to experience an outdoor activity. 

So I live in an interesting corner of Western Colorado near a bunch of 14,000-foot mountains. Ever since I lost my sight, I have been very motivated to regain abilities and go even further, because I was 22 years old. I mean personally, traveling blind, it can be frustrating and there can be a lot of anxiety, but technology and stuff allows for so much in a sense of being prepared and having access to, you know, different types of public transportation. I mean, some countries in the world just don’t do a good job in a sense of disability. The U.S. has its problems in different areas, you know, but for the most part, there’s the ADA – The American Disability Act – which helps quite a bit in a sense of standardization to some degree. But yeah, I find my way. I figure it out. I just explore with a cane. I don’t have a dog. I could get a dog, but I feel like the dog’s gonna, you know, it requires more work and other things, so. 

AY: Right. How would you say the other places you’ve traveled to have accommodated you? 

SB: It’s been, I mean. I’ve been to really run-down parts of countries, you know. Poor countries like outside of Europe: Armenia; Moshi, Tanzania; or Baghdad, Iraq when I was sighted. You know, Kathmandu, Nepal. These locations don’t really cater at all to you. They don’t have anything, maybe in very specific buildings, or government buildings or something. They don’t even have traffic lights in some places, or anything, you know. But then there are other parts of the world, major cities and I guess first-world countries or whatever you want to call them. They tend to have more laws and regulation and of course, education and informed citizens. It’s very diverse, but I love diversity. The world is not perfect, and so blindness teaches you to be patient and be resourceful. if you choose to work things out and develop systems and techniques, procedures for doing stuff. So the military has kept me disciplined in that way. You know, my background in the military. In blindness, you have to be organized to some degree. ‘Cause you’ll lose things, you’ll break things, or you’ll get lost, so you have to be prepared. 

AY: Yeah, so be a survivor. 

SB: I guess, yeah. 

AY: That’s a good mindset.

SB: Everybody needs to try to survive. 

AY: True. So then what would you say have been your most memorable experiences?

SB: In the past year? 

AY: Mhm 

SB: You know, going back to school is important to me. I tried to go back to school like three years after losing my sight and it was very difficult. ‘Cause I, you know, was still adjusting, I’m still adjusting now, but I’m way further along, I guess, in this journey, you know. What I’m accomplishing right now in school with learning a very technical software program becoming very proficient in using it to capture audio. You know, like to record a whole band to do multitrack recording sessions to record a guitarist’s, or a drum, or so on to work with them, communicate with them, take the equipment and dial in their correct settings, and bring it into the digital realm or computer, and then edit it and produce it and spit it back out. I’m very proud of that. It’s going to be a very memorable thing in a sense of remembering the year of 2020. 

It is a bad year, to me. it’s been hard as well in other, you know, just separation from people. But I just really enjoyed my studies and it’s hard, because with my travel, all the things I have been doing. I don’t know if I would have settled down like this and worked as hard as I have the past year, so, it’s kind of a blessing or whatever you want to call it. The pandemic made me focus, so it’s good and bad.

AY: Yeah, I suppose. So since you’re working with these people remotely though, what is it like? You said there are more accommodations. 

SB: Yeah, I mean, I’m trying to become skilled so that I can work. I’m not really working too much with a lot of people right now. I do have a friend in the area that comes over. He’s a guitarist and I’ve practiced with him. I’m a drummer as well. I am a musician too. We record our recording sessions. He helps me practice, ‘cause I need a musician. But yeah, it is hard not to be close and around people. I would love to go and have some mentoring in a recording studio. And that’s what I’m hoping for this year, maybe in the coming years. But I’m just doing schoolwork right now. There are a few people that send me things and I work on it ‘cause a lot of people get their stuff recorded somewhere else. It’s a remote job a lot of the time anyway to some degree, so unless you have work in a full-on studio. My home is more or less my studio. I have a home recording studio, so. 

AY: Wow, you’re able to navigate around with no problem since you’re at home. 

SB: It’s nice. Home is a familiar place, so yeah, it’s easy to navigate. If you saw all the buttons and controls on my control surfaces and stuff, you’d be like “how do you memorize all the buttons?” 

AY: Right. 

SB: That’s going to be more difficult to navigate sometimes. 

AY: So how did you try to get to know those controls? 

SB: I’m part of a very small community of professional audio engineers that are blind and visually impaired, and again, technology is providing that opportunity. It’s a WhatsApp group. It’s just a group where there’s probably 80 people from all over the world. I work with people from Columbia, Brazil, Peru, UK, Australia, Japan, China. I mean, they’re all over the place. 

They’re just individuals theatre blind and we share how you work with the software and talk about the equipment and so that’s been a lifeline in a sense of. There is no good information on the web or any kind of formal school. There’s one school that’s run by a blind person in the world that I know of. It’s called I See Music, it’s in the Chicago area. It’s the only formal thing you’ll find if you search on the internet. Really, like an institution or a place you could go to that teaches a lot of what I’m trying to learn. I’m just going to a traditional college along with sighted people. I’m one of four people in this college. I think there’s 3 that’re blind. Maybe there’s 5, I don’t know. It’s very very few. So yeah, this group on the internet. This international group of individuals is where I get a lot of help and answers and recommendations. So that’s how I’ve learned the controls and then just exploring it myself.

AY: Oh, that’s really helpful. Overall it just sounds like it’s been eventful for you, very eventful. 

SB: Yeah, I mean, I’ve just been inside my home all year long. Pretty much, you know. But mostly, nothing looks any different. I’m blind, so wherever I go, it’s the same. But yeah, I’m looking forward to things, you know, kinda moving back to normal. Life must go on. 

AY: Right. We’re all hoping for that. 

SB: I mean, I served in the combat zone where I was being shot at and literally, you know. I mean, someone’s trying to kill me the day that I lost my sight. They killed my friend next to me, so I have a different mentality about the virus and stuff. But it’s not that it’s not important to heed warnings and be safe. But I went into a war zone and lost my sight, so it’s an interesting feeling I have about it all. Even in a warzone, families and people have to get through. Life continues. It has to. So, we got to find a way to keep going. 

AY: Exactly, and thank you for serving for us, by the way, like at the cost of your vision, too. 

SB: No, thank you for your kind words.

AY: So after meeting Joe though, how did that bring more awareness to your own vision? 

SB: Well, Joe came to me right after I lost my sight. The same year – within months – and I was going to blind rehab. That’s covered, you know, in the documentary. Well, I was learning a lot from rehab in the location I was in, but the film has allowed people to ask me questions, ‘cause a lot of people have seen the film. Or I’d run into people that have seen the film and then they recognize me ‘cause they either work in blind rehab or something. So it’s been good. 

It’s great that it’s informative and creates awareness ‘cause that’s really important. The more awareness there is about any kind of disease or disorder – visual disorder – it allows for accessibility and more things to be created. So, I think it’s wonderful what Joe’s done with the film and how it got pushed around on different networks. I think PBS primarily. But yeah, I love documentaries too and that kind of stuff. It’s a good thing. 

AY: Oh, yeah that’s great. So it was good hearing that you’ve done well since the film. Thank you for doing this interview with me.

May 28
0

Going Blind & Catching Up with Andrea Yu: Jessica Jones

By | Jessica Jones, Updates

Going Blind & Catching Up with ANDREA YU:
An Interview with JESSICA JONES
May 28, 2021

A year after the start of a global pandemic, Andrea Yu, who is a student with City Access New York interning with A Closer Look Inc., spearheaded a series of interviews with characters from Going Blind (2010) to find out how they fared through a year of COVID-19 lockdown and where they are now in their sight-loss journeys.

Up first, Andrea spoke with Director Joe Lovett, who reflects on his life and vision and offers a glimpse into the lives of the characters you’ll hear from in the coming weeks.

To listen to the interview, visit A Closer Look Inc.’s Soundcloud by clicking here.

To view the film, Going Blind, click here.

ANDREA YU: Hey everybody, this Andrea Yu. For the second episode of Going Blind & Catching Up, I interviewed Jessica Jones. We talked about how she, her students, and her guide dog Willie during this pandemic.

Hello Jessica. In the film Going Blind, you said you have diabetic retinopathy and you work as a teacher and a photographer. So how have you been during this time with this pandemic? 

JESSICA JONES: It’s been very interesting. If you know teachers other than myself, I’m sure that you have heard about the difficulties of teaching remotely. It adds a little extra piece of this fun puzzle that we’re living in with teaching remotely. In my school, we don’t use zoom with our students. We use an application called Google classroom. 

\When you have any sort of speech software on a computer or on my phone, that speech software takes up so much space and it’s doing so much work. Sometimes it seems almost in a juxtaposition to different applications that you have going and the majority of them work incredibly well. Since Apple products came out, where we are with being able to use the Internet effectively is astounding. I got my first iPhone 10 years ago and it completely changed my life as far as technology goes. You know, with Google Classroom, JAWS does not work well with it, and I can do all of the rudimentary things, such as going online, meeting up with my students, presenting a lesson, etc., and so forth. With more advanced applications within Google Classroom, there are still some things, because the speech software that I use on a computer is called JAWS. JAWS and Google Classroom don’t work very well together. So it has been a constant learning experience. Of course, Google does updates so so frequently. Every time you figure something out, it changes. Again, in that juxtaposition between Google classroom and JAWS, teaching has been very very interesting and very very frustrating at times, but I’m still doing it! I’m hanging in there.

AY: Right, I can imagine with all these technological difficulties. I would assume it is more accommodating than other platforms like WebEx, Zoom, or Blackboard Collaborate though? 

JJ: Well, Zoom I find to be much much more accommodating.

AY: How so? 

JJ: It doesn’t seem to be the same battle going on. For example, you know the speech software that I use on my phone is VoiceOver. The one I set on my computer is JAWS. There doesn’t seem to be the same battle going on between VoiceOver or JAWS and the Zoom application. Speak to any fully-sighted teacher that you meet and they’re going to tell you that Google Classroom is difficult as well. It’s just that extra layer of difficulty that JAWS provides that’s a little intimidating. 

AY: Right. Since you are facing such issues with these technologies in your teaching job, how is photography going for you?

JJ: Honestly, I have not done any photography since the pandemic started. I’m not going to have anybody into my home to do it. Usually, we work in groups, because I cannot see through the camera. You know, I need to make sure that the shot that I am setting up is exactly what I want it to be. Getting together in groups like that is impossible right now.

AY: Right. So what have you been doing instead of photography? 

JJ: As far as art, I like to build. I am constantly building something either on my own for my own satisfaction or with my students.

AY: What do you like to build?

JJ: I think the real question is what don’t I like to build. I like going from one extreme, you know, doing things that are figurative to things that are more abstract and simply just putting objects together that I find pleasing in a combination that I find pleasing. 

AY: So somewhat like sculpture. 

JJ: Yes. The only tool that I no longer weld or use the blowtorch.

AY: Oh right that is quite dangerous. 

JJ: Yes.

AY: Do you also do other kinds of sculpture, like with polymer clay? 

JJ: With clay, with paper mache, with wood, with like I said found objects. I pretty much do everything.

AY: So you’re quite active in this time.

JJ: Yeah.

AY: Wow. How has your vision been treating you? 

JJ: How has my vision been treating me…Well like I said, I don’t have any vision, so I’m not quite sure I understand your question. 

AY: Ah, more like…since the pandemic started, people have been hesitant to go to their eye doctors to attend their appointments, so they do not have as much access to their treatments.

JJ: I understand what you’re saying. In the beginning, before anybody knew more about this virus, all of my doctors’ appointments were over the phone, or over Zoom, or over FaceTime. Since we have come to know more about the virus and what you can and you cannot do, I am now making doctor’s appointments in person. Beside that, I feel more confident. I had an advanced vaccination more than a month ago, so I feel pretty confident. Not 100%, for sure, because we still don’t know if you got the vaccinations and you can still be a carrier, things like that. But I feel much more confident than I did. 

AY: Oh, that’s good then. You are quite capable during this time. 

JJ: Yes, I still have Willie who I’ve got to take care of. I don’t have a choice in that and I’ve always found it difficult to be told that I cannot do things – Willie got very tired of not working. He needed to do things, he’s a working dog. That is what makes him happiest. And so, I had to figure out a way to get him out and doing things. Very much against my mother’s better judgment, I started scheduling walks very very very early in the morning and very very very late at night. So of course at that point, I was not going inside of the grocery store, the post office, or anything like that. But at least Willie was out and guiding me and working. Like I said, that’s truly what makes him the happiest. 

AY: So then you accommodate him, while he does the same for you and you can both enjoy your time together. 

JJ: Absolutely, yeah. You know what? That’s a really good way of saying it! Andrea, yes. 

AY: So then nowadays, have you guys continued taking these walks? 

JJ: Oh sure. Wednesdays are still remote, just so that in the middle of the week, the school can be thoroughly sanitized from top to bottom. You know, we’re doing that constantly as we work with the students. There is no sharing of paintbrushes and scissors anymore. One child uses the paintbrush, then I’ve got to sanitize it before another child picks it up. So we are completely back at work, but like I said, still having our remote classes on Wednesdays. 

AY: You guys are very cautious during this time, which is good, and how have you been accommodating the students though? 

JJ: Well, we still have about 50% of our students whose parents find they are not yet ready to put their children back in school, and that will continue throughout summer school. And then beginning next September 21, it will be mandatory for all students to be back in school for in-person learning. So a good 50% of my students, we are still working with them remotely along with the students that are physically in school 4 days a week. 

AY: Right. How are you all preparing for that though once everyone comes back? Are you still going to take precautions? 

JJ: Oh, absolutely. Precautions will be taken. I am quite sure that the extra sanitation will continue. I know personally on my part, the extra sanitation will continue. We have not yet received a game plan in writing from the superintendent of the school as to how exactly things will be done come September. But I do know that on a personal level, I will continue with the personal sanitation that I’m doing with our tools. 

AY: You are all working very hard to keep everyone safe and that’s a really good thing. That’s very admirable, because a lot of people nowadays, well, they don’t seem to take as much precaution as you. 

JJ: Oh, I agree with you. Absolutely. 

AY: Right, so just hearing this from you, it’s hope that the pandemic will end, hopefully sooner than what we expect. 

JJ: Hopefully, fingers crossed. Fingers and toes crossed.

AY: Right. Well, it was great hearing from you and how everything seems to be going great! 

JJ: Oh, thank you so much. I really do feel that things are looking up. 

AY: For sure. Thank you for speaking with me today.

May 21
0

Going Blind & Catching Up with Andrea Yu: Joe Lovett

By | Joe Lovett, Updates

Going Blind & Catching Up with ANDREA YU:
An Interview with JOE LOVETT
May 21, 2021

A year after the start of a global pandemic, Andrea Yu, who is a student with City Access New York interning with A Closer Look Inc., spearheaded a series of interviews with characters from Going Blind (2010) to find out how they fared through a year of COVID-19 lockdown and where they are now in their sight-loss journeys.

Up first, Andrea spoke with Director Joe Lovett, who reflects on his life and vision and offers a glimpse into the lives of the characters you’ll hear from in the coming weeks.

To listen to the interview, visit A Closer Look Inc.’s Soundcloud by clicking here.

To view the film, Going Blind, click here.

ANDREA YU: Hello everyone. I’m Andrea Yu, an intern at A Closer Look. I interviewed Joe about the making of the film. We discussed the decisions he made in selecting the characters and settings, how this experience taught him more about adaptation to low vision, and the effect of COVID-19 on him and other glaucoma patients.

Going Blind premiered 11 years ago. What does this time mean to you and how have you viewed progress, both in terms of stigma and treatment, since the film came out? 

JOE LOVETT: That’s a very good question, Andrea. I think there’s more awareness about sight loss than there used to be. I think there is a growing willingness to talk about it, which there hadn’t been when we started the film. 

In terms of glaucoma, I think there’s still a tremendous amount of ignorance about it and unfortunately, research has not gotten into the clinical trials that we would like to see in terms of restoring damaged optic nerves and things like that. It’s slow, but I think one of the problems is that we haven’t had a very engaged patient population. 

I think the patient population with glaucoma for the most part has been rather passive and it is often kept in the dark about how the disease progresses and we’re trying to change that.

AY: So, why is it kept in the dark? 

JL: Well I think there’s a general discomfort with the idea of sight loss and I think people who’re sighted are terrified with the aspect of losing their vision and anyone else losing their vision. And I think that that fear comes from ignorance and myth. I mean, very few sighted people actually know anyone who has “successfully” lost their vision.

And making the film Going Blind, I was able to meet people who have made the adjustment from sighted to unsighted, and were able to continue their work and their relationships with the tools that are available, which are many. And I think that that makes a huge difference. 

But also, I think physicians are very uncomfortable with the idea of any of their patients losing their vision. Many doctors see it as their own personal failure, and are reluctant to. talk about what may happen in a patient’s life. If they lose their vision, how they would make the adjustment so that people are prepared for it as well as they could be.

AY: Right. So then you yourself being a glaucoma patient undergoing vision loss, how did interviews with the characters in Going Blind influence you and your awareness of your low vision experiences?

JL: Oh, it was tremendously helpful to me. I had no idea when I started the film that this would be such a help for me. Role modeling is so important in our lives. Seeing people that do things and achieve things, or be a certain way, whether it’s about achievement or acceptance or points of view. The way that different people handle their lives you know, are examples for us as we get to know more and more people. We can choose how we want to go about it and get people’s help that have gone- done things before us. 

And in this situation, I had the opportunity to meet people who had gone through what I was going through, which was vision loss. Some gradually, like I did, like I am. And some very quickly, dramatically. And I got to learn how they went through it. what their emotional journey was, what their medical journey was, what their rehabilitation journey was.

And you know, I met extraordinary people. You know, Jessica Jones, who teaches blind and visually impaired children. and multiply disabled children and she’s sort of fantastic at what she’s able to do and Jessica’s lost all of her sight to diabetic retinopathy.

Ray Cornman, who helps so many people at the Seeing Eye become adjusted. and he has slowly lost his vision to retinitis pigmentosa. Steve Baskis, who lost his vision immediately in a roadside bomb attack in Iraq, is now climbing mountains. These are people who showed me that you know, this is all doable. That it’s difficult, that it’s a challenge. But you can learn skills and adjust and live your life and that’s very very very important, I think for all of us.

AY: How did you meet these characters in the film? What was it like to get them to open up about these intimate aspects of their lives? 

JL: Well, actually it was pretty natural. I started talking to people on the street. My doctors were unwilling to talk to me at the time about the potential of further sight loss. And so I searched and talked to people on the street. I talked to people with dogs and canes. I always offered somebody my arm, you know, at the crosswalk. I had to ask if they needed any help going across the street. And this time, I would ask them if they did, or if they didn’t, I’d say “do you mind if I asked you some questions for sight loss, because I’m losing my vision.” 

And people were incredibly generous, Andrea, with their stories and they took me into a secret world, really. A world that I’ve been walking past on the street, you know all my life when I would see some people, their dog, or a cane. But I’d never known what they were really going through. And it was just so generous of these strangers.

So, Jessica, I met on the street when she was picking up her dog’s poop one day. She lived down the corner from me and we started to talk and I said “Gee, would you be in this film I’m making?” And she said, “Of course!” 

And then I met different people from different referrals and doctors recommended me to certain people. The Blind Veterans Association introduced me to Steve Baskis. As a reporter, a journalist you get to reach out and people come back to you with ideas and I chose our cast from a large group of people that I had met. 

I chose them, because they had interesting stories, they were interesting people, they were people that you would want to spend time with. And you know, that’s how the thing about casting in a documentary. You want to talk to people that you would want to have dinner with or be your friend. And that’s how it worked out.

AY: Yeah, so how did you come to the decisions about the locations you chose to interview the cast, because that’s quite important, too. The atmosphere? 

JL: Oh, very good question. Jessica, it was very important for me to see her on the street, because It’s just in New York City and she was so capable on the street with her dog. And getting on the subway and although she was afraid of it, she was very adept at it and I thought it was very important to make it clear that this is not easy and it’s anxiety-provoking, but you can do it. And that is Jessica. 

It was also very important for me to show her working with children. She was great and unfortunately, the school she was working with at the time did not want us to film for various reasons. And so, the Metropolitan Museum of Art arranged to do a class with her on art and she’s an astounding teacher and has breakthrough moments with the kids. Really extraordinary scene. 

Steve, I met when he was in rehab at the Blind Rehabilitation Center in Chicago veteran’s site. We filmed him going through his rehab, what that was like. Then we chose to come back to him a few months later when he was living independently to see how he was doing, and to see what’s the difference between being in the institutional setting, where you have people helping you and you have other people going through the same thing. So, what’s the difference between that and living on your own by yourself and trying to make things happen? It was very very different. We left Steve there. We didn’t follow up with him, because I knew he would adjust well. I wanted people to understand that this is tough and we’re leaving Steve on the tough part of his journey. When the film was finished, he wasn’t able to attend our premiere because he was climbing mountains. That’s the progress that this guy made. He’s absolutely remarkable.

Peter D’Elia, who’s an architect. We showed him working on drawings, we showed him playing golf, and still want to see within his life. 

Pat Williams, her work at the veterans’ administration and the difficulties she had, and how she was trying to overcome them. 

Everybody was just so honest about their feelings, it’s like a breath of fresh air, you know? I can’t tell you how many people who’ve seen the film felt so relieved hearing people being honest about their feelings and carrying on with what they were doing. It was very inspiring for so many people who are losing their vision or afraid of losing their vision.

Andrea: This is all very inspiring. 

Joe: Oh, I find it inspiring. I mean, I went through a period after an operation not too long ago when I had a bleed during the process and I lost all my vision. It was scary, but far less scary than had I not done this film, because I knew that if indeed my vision didn’t come back, and I was quite sure it would, and I was reassured that it would, but still you’d wonder. You know, I knew that I could handle this. But I wouldn’t want to have to do it. I wouldn’t choose to lose my vision. But I could certainly handle it. It would be difficult, but I could do it. I think that’s very very important, because most people think they can’t do it or how would I do it. “It’s impossible.” I learned from the people that I met that you can do it. It’s difficult, but you can do it.

AY: Right. There are many obstacles that come along with vision loss. 

JL: For sure. It’s not the preferred choice [Laughs].

Andrea: Right. Speaking of which, with COVID-19 impacting in-person access to medical help, how has the past year affected your vision? How are you adjusting to the changes in your vision?

Joe: Because of the shutdown, my activities have been limited to my home and my office, which is also at home for the most part. And as a result, I’m pretty comfortable, because I have partial vision and it works pretty well. Quite well, actually. On the outside, I have to be careful, but I function quite well. Inside, I don’t have to be as careful, because I know my way around, so it’s been quite comfortable for me. In terms of follow-up with medicine, I haven’t seen my doctors as much as I would normally. Normally, I would go every three months. During Covid, there are long periods that I did not see them. 6 months, 9 months, perhaps. 6 months was the longest. 

When I did go in, we made an arrangement for me to go first thing in the morning so I wouldn’t be exposed to other people. It’s triage in a situation like this. My ophthalmologists were volunteering in COVID units. So you have to be in touch with the seriousness of your problem. My progressive glaucoma is not quite as serious as someone having a heart attack or cancer, whatever. It’s a triage kind of situation, but now we’re going back to regular treatments. 

Andrea: How has COVID-19 affected some of the characters in Going Blind? Have you been in contact with them?

Joe: Yeah, well some of them. Jesica has been working from home and it’s been difficult because of some of the settings on the school’s computer and things like that. They could really use an upgrade. But she’s been doing it. I think for everybody, it’s been very difficult. She’s the only person I’ve been in touch with specifically about COVID. I spoke to Pat Williams, but she’s retired now. I haven’t recently been in touch with Peter or Ray. 

Andrea: Oh, that’s okay, because we will get an update on them soon! 

Joe: That’s great. 

Andrea: So it was nice speaking with you today, Joe. 

Joe: Well thank you very much, Andrea. Thank you for your very well-put questions and it’s a pleasure to work with you. You’re so terrific.