Guide
Ellen Mazel oral history
Ellen (Cadigan) Mazel has over 45 years of expertise in the field of visual impairments, multiple disabilities, deafblindness, and CVI.
Biographical information
Ellen (Cadigan) Mazel has over 45 years of expertise in the field of visual impairments, multiple disabilities, deafblindness, and Cortical/Cerebral Visual Impairment (CVI). Throughout her career, she has worked in residential programs, educational collaboratives, early intervention programs, and public school classrooms.
She first came to Perkins in 1977 to work as a teacher in the Deafblind Program until she left to teach in the Melrose Public Schools in 1983, where she worked until 1993. From 2002 until 2012, Mazel was a Teacher of Students with Visual Impairments (TVI), Deafblindness, or CVI in educational programs at Perkins. a public school collaborative. After teaching in a public school collaborative, Mazel returned to Perkins in 2017 as the CVI Project Manager and Director of the project two years later, before taking her most recent role of Director of Research and Development in the CVI Center in 2021.
Mazel received her Master of Education degree from Boston College in the program for children with deafblindness, ocular visual impairment, CVI, and multiple disabilities.
Related resources
If these materials aren’t accessible in part or in whole to a user because of a disability, please contact [email protected] to request an accessible version.
- Ellen Mazel presenter biography at Perkins.org
- Ellen Mazel Discusses Cortical Visual Impairment (CVI)
- Ellen Mazel on the challenges and reasons for optimism around CVI
- The Perkins CVI Protocol
- Complexity in Phase 1 of CVI (webinar)
- Cortical Vision Impairment: Assessment and Intervention (webinar)
- Assessing Complexity for Children with CVI (webinar)
Notice and permissions
This interview is a digitized copy of a tape-recorded interview conducted for the Perkins School for the Blind. The interview was conducted on February 21, 2023, by Susanna Coit. The audio and transcript are provided unedited.
This oral history transcript may be quoted if cited. A preferred citation is provided. The interview may not be published in full except with the permission of the Perkins School for the Blind. For permission please contact [email protected].
Preferred citation
Mazel, Ellen. “Ellen Mazel oral history interview conducted by Susanna Coit,” 2023-02-21, Perkins Archives Oral History Project, AG176-2023-02, Perkins School for the Blind Archives.
Audio recording
Transcript
Susanna Coit [Coit]: Today is February 21, 2023. This is Susanna Coit. I’m here with Ellen Mazel, who has had many roles at Perkins, but is currently the Director of Research and Development in the CVI Center. We’re conducting this interview virtually via Google Meet. Ellen, are you OK with me recording our conversation today?
Ellen Mazel [Mazel]: Yes, I am.
Coit: Excellent. So to get started, can you tell me when you came to Perkins and how long you’ve been here?
Mazel: Yes. I came to Perkins in September of 1977. And my name at that time was Ellen Cadigan. So I went to the Deafblind department, and I stayed there for about eight years. And then I left for a while and went to public school. And then I came back and worked in what was called Educational Partnerships, which became Community Programs later. And that was mostly infants and toddlers and some school contracts. And then I left there for another little while. And now I’m back in the CVI Center.
Coit: Excellent. So when you first started, how did you come to Perkins? What brought you to Perkins?
Mazel: I went to Boston College. They had a free master’s program in 1976. And it was a great program because it involved classes at Boston College, but also work experience.
I went to Omaha, Nebraska, and worked in a hospital school with some theorists, some cognitive theorists. I went to Lynchburg, Virginia, and worked in a state institution, which was interesting. And then I went to Micronesia for four months and worked finding children who had vision and hearing problems.
So I sort of– I ended up here because I had done a couple of observations, or we had to come over here for certain classes at Perkins and work with the kids. So that’s how I knew about Perkins in general.
Coit: So did you go into the program knowing you wanted to work with kids who are visually impaired? Or how did that come to be?
Mazel: When I was at Boston College, I was in the Special Education program. And I was interested in special education. But at Boston College, this was the sort of general special education. And it was OK.
But actually, at a party, I heard from another woman that she had gone into the Deafblind program at Boston College. And she was just talking about how great it was, and that you did travel, and you had work experience, and you got a free master’s degree because in the ’60s, ’64, ’65, the rubella epidemic caused a tremendous number of kids to be born with deafblindness. So the government funded 10 different centers for deafblindness and gave teacher training programs that were for free. I’m not sure I could have gone to graduate school without that support. So that’s how I ended up in the program.
And it’s funny because you go into something with one idea. And I think my idea was I was going to go in and help blind children or deafblind children, also. And what I quickly realized is that I was amazed by blind people and amazed by deafblind people more than I felt like I was “helping them,” quote, unquote. So I always found that an interesting shift in my thinking.
Coit: Yeah. That’s great. And when you first started, what were your– can you describe your job and the responsibilities when you first began at Perkins?
Mazel: Sure. It was the Deafblind Program. And it was set up at that point, I went into the high school part of it. And the classes, you rotated through classes, like science, social studies. And the kids were all visually impaired and hearing impaired. But they were very academic at that point so we taught departmentalized classes. Kids traveled between our classes and whatnot.
And what was interesting is two staff members were deaf at that point. So everything happened in sign language. So I think I had come in with maybe one class in sign language under my belt and quickly had to get up to speed just to participate in meetings, and the kids, too. The kids were very fluent. And it was a big adjustment. It was definitely fake it till you make it.
Coit: Nothing like an immersion program, right?
Mazel: Oh, absolutely. And I had just the gift of a wonderful teaching assistant, who really, I mean, she was the teacher. She operated as a teacher my whole first year. I mean, there is no question about it. She just had so much deeper knowledge than I did. She just didn’t have the educational credentials. But she so totally taught me so much about working with kids and just handling every part of it. So I really always am grateful for her.
Coit: So how did you get where you are today, as in your current role?
Mazel: Oh, boy. It’s always interesting, right? Well, I think that when I was in the Deafblind Program with the teenagers doing the compartmentalized science and social studies, the kids were 15 or 16. And it just became more and more clear that they didn’t have functional skills. They didn’t know how to cook. They didn’t know how to do their laundry.
And so Mike Collins was the head of the program at that point. So I went to him and said, I really want to switch, and instead of science, I want to make sure they can do their laundry or cook.
So he allowed me to set up some apartments on campus. And the kids would live in the apartment, and I would give them fake bills. And we’d do food shopping. And it was sort of an immersion for them.
And then they all had jobs. And they all had jobs at Brigham and Women’s Hospital or Watertown Savings Bank, different kinds of restaurants. They all went out to work and worked independently. And some of them traveled back and forth by themselves. So I was always really interested in that foundation of functional education as well as academics. It felt like time was running out for them.
So I did that for a while. And then I decided that I would just try public school for a while. And that was very, very good for me because Perkins has so many resources and so many– just resources is all I can say, and expertise, that it was really good for me to work in a system that was really not made for kids with special needs and to try to negotiate that and serve my children that were in those public school programs, to serve them as the best as I could in that system that really was more set up for the kids with more traditional learning skills. So I did that for a while. I learned a lot.
And then I stayed home with my kids for a few years, which was also very humbling because I had said a lot of things to parents when I was young that they should do something 15 minutes twice a day or something like that. And when I had my own kids, it was like, I’d get in bed at night and realize all the things I hadn’t gotten done.
Coit: Of course.
Mazel: That was really humbling. And I actually apologized to some of those parents [? before ?] me. Said, I’m really sorry. You must have really hated me, I said. But they were very gracious and didn’t hate me. But it was perspective. It’s always perspective.
Coit: Of course.
Mazel: And then I went back with the infants and toddlers. And I think that was really interesting because I had worked with the teenagers living in their apartments and working. And then thinking about, what should I be teaching these kids when they’re five or four or three that’s going to make them better able to handle the world when they got older? So again, I feel like that was such a gift to have had that view of the older child when I went back with the infants and toddlers and worked with families in the home. I thought that was really interesting.
And one of the things I really liked about early intervention is that when I first met these parents, they were so overwhelmed with their situation, just having had a child with a disability, of blindness, especially. And yet, within a year, they just, 9 times out of 10, could really pull up and begin to just operate as a family. They figured it out.
And I always just thought that I was just a witness to that miracle of figuring something out from no knowledge of that at all, no knowledge of blindness at all, to having a child with visual impairment, and then just negotiating it and being a family. And so I appreciated that. So I felt like every step brought me somewhere else.
And then when I was working in Infant Toddler, I started getting these kids who the eye exam just didn’t explain how they were using their vision. And I would go on the doctors’ visits with them. And the doctors just didn’t have an answer for what was going on.
And so at Perkins, they had somebody come to speak about CVI. And I was just– here I am, 25 years in the field, finally thinking, oh my gosh, your brain– your eyes are actually connected to something. We should think about that whole system, not just the eyes. It was like, I can’t even believe I didn’t think about that. But I didn’t. So that led me just to this really strong interest in CVI and the brain.
And so when I was working out in an educational collaborative at the time, Perkins would hire me to come in and talk about CVI, actually, Mary Zatta’s department. So I did some online classes for them. And I came and did lectures for them.
So then at one point, someone said, hey, why don’t you come to Perkins? We need to think about CVI. So I came on. And I think they called me CVI project director for a while.
And then we got a big, huge grant to do some strategic planning. And that meant we were just going to really think about what would a CVI center at Perkins look like. And so we now have a CVI Center, and roles all split up. And I ended up in a role of research and development. And I’m currently working with Marguerite Tibaudo and Ilse Willems to build a CVI assessment that we’ll have online. So that’s the long story of how I got where I am.
Coit: It’s a great story. It’s a great path.
Mazel: It was.
Coit: So just a couple of quick questions. What year were the apartments that you talked about, where students were living, and then they would go to work?
Mazel: We did that, I would say, it’s 19– I would say that was about ’79. And again, it was Mike Collins was just very, very– he listened really well. He was the head of the Deafblind department at that point. And he really listened well and just allowed you to go with your passion.
And at the beginning, I had five girls in my class. So five of them lived in the apartment together in Tompkins Cottage. And as I said, cooking and laundry– we simulated the apartment as closely as we could. And then they were all off working, which meant they had to negotiate and work with coworkers and all that kind of stuff.
So what ended up happening is they expanded that program so that all the kids got a chance to do that sort of thing. And now I think they’re doing it a little bit more on campus with the kids and thinking more about that preparation for them when they get out. But yeah, that was like ’79, I would say.
Coit: And then do you remember when– approximate year would be great– you remember the CVI discussion starting at Perkins? You mentioned someone came to speak about Perkins. Do you remember when that was?
Mazel: Yes. I would say that was about 2002. And they came through New England Deafblind Consortium. I forget what it was called at that point. But someone came on campus and talked about CVI at that point. And I just kept reading and going to any lecture that I could. And I continue to learn about it. I mean, I think it’s just more and more all the time.
Coit: Yep. So more general question– what’s the most memorable event or experience from your time at Perkins?
Mazel: Oh, my goodness.
Coit: Or one of the more memorable.
Mazel: One of the more memorable? I would say that it was really– a lot of it was the camaraderie with my fellow professionals that– and I think this is unique at Perkins, or it feels very unique to me at Perkins, that people have a real passion for what they do. They have a real commitment to what they do.
So if you have someone coming in to lecture, people will sit there and listen till the person is done. Nobody gets up. Nobody leaves. No matter what time it is, people want to hear that. So I think that that’s– the camaraderie is really interesting at Perkins.
The other thing I think is that somewhere along the line, when you’re working with a group of kids, someone will step up as the champion of a child. Even the most difficult child, someone will step up and be that child’s champion and help everyone else appreciate them better.
And I just saw that again and again at Perkins, where we would have some kids that were challenging behaviorally or whatever. And someone would just always step up as their champion, completely unsaid or unscripted or unassigned. But everybody knew everybody needed somebody.
And again, I think that went to the camaraderie of the group. People appreciated the other person’s perspective on the positive nature of that child and how we could foster that and grow that. So I think that was great.
Coit: That does sound great. And what do you think have been the most important changes at Perkins? And I know that that can be a number of things.
Mazel: I think that there’s been some– since I’ve been working here– so when I started in 1977, the children were– there was no medical involvement. I remember even if a child had diabetes, that was a big medical issue that they were unsure about, unsure whether a child should be accepted with something of that– what I would consider now such a simple fix.
But we just didn’t have big nursing staffs or big OT programs or PT programs, because the children, really, blindness or deafblindness was their primary disability and some learning issues and things. But no medical, no physical, not really any physical. But that was the population back then.
And I think as time has gone on, children with just blindness only have reduced in general because of surgeries or medications or therapies. You just don’t have a lot of retinopathy of prematurity. You don’t have those kids that are just blind. It’s usually blindness with something else going on.
And so I think Perkins adapted to that and changed over the years to accommodate what the most need was. For instance, in 1977, deafblindness was a big thing. And because of the epidemic of rubella in ’64 and ’65, Perkins had never dealt with a deafblind person before. But no blind schools wanted them. And no deaf schools wanted them.
And Perkins stepped up and made a deafblind program. I think it was one of the first in the country, and incorporated it into its programming.
And I think they’re doing it right now for CVI also, just seeing the huge number of kids and just stepping up and saying, this is the trend. This is what’s happening right now. This is the population we should be serving. So how are we going to not only serve our own children, but learn from that, and then share it with other people? And that’s what e-learning is all about and the bringing people in internationally to allow them to work here and learn from us. I think that’s all about sharing our understanding of blindness and deafblindness.
Coit: And related to that, what are some of the most interesting or important events that have happened in your time at Perkins?
Mazel: I would say I’m not sure there were really big events as much as gradual and consistent change that evolved. It just really evolved. I don’t remember any big announcements of things or big events or anything. I feel like it was more gradual.
It was almost like Perkins learned that it was something they should step up about, started to speak about it, and you started getting more kids that had that involvement. And therefore, you got better observing them, and then better at sharing what you learned. It was more, I think, much more gradual than any big events.
Coit: And do you know anything about Perkins that you think would be surprising to people or that they might not know about Perkins?
Mazel: Well, it’s very funny because, of course, I’m 68 years old now. And I came here as a 21-year-old, way back when. And way back when, there were tunnels that connected all the programs, all the older buildings. And everybody traveled in the tunnels to get from one building to another, especially on bad days or whatever. So that’s a surprise to people because all those tunnels are closed off now.
Then there were air raid shelters from the ’50s that people don’t know about. And I remember, it must have been in the late ’70s or early ’80s, they emptied the fallout shelters. And so each family– and a lot of people lived on campus back then. But each family had this huge drum that they put extra clothes in.
And so they had a big auction of all the stuff that was in the fallout shelter, like clip-on lamps for bed. And it was just, I mean, I bought some of this stuff. But nobody would think about that back then, because it was just– and some of the people that I worked with when I was 21 had actually put stuff in the shelter in the ’50s. They had been here in the ’50s. So they were reclaiming their old clothes. Kind of a laugh because of course, it’s–
Coit: Like a time capsule.
Mazel: Like a time capsule, absolutely. So those are probably two of the things that people don’t get. I mean, there were things like orchards. There was an orchard here.
We did a lot of sports between other blind schools or actually other schools around. There was a lot of more sports abilities of the kids. So that happened more. Yeah. So I think those were some of the things I think of.
And then there was a bowling alley where HR is now. That was really fun. And nobody knows there was a bowling alley there. So yeah.
Coit: We have a picture of that in one of the old Lanterns. And it always surprises people when we show them.
Mazel: That was one of our activities during the day with our kids was to go bowling. And we incorporated math. And yeah, it was fun.
Coit: That sounds fun. A good way to learn math. And what have been some of the more difficult or challenging aspects of your work, either in your current role or previous?
Mazel: I think it’s always– I think it’s just maybe change doesn’t happen fast enough at times. And it depends on who’s in charge, obviously. I think I’ve been very lucky, actually, at Perkins and in my other jobs, for the most part, having administrators that I could have a conversation with and explain my point of view. And sometimes, they could pull it off. Sometimes, they couldn’t.
But I felt like I was listened to. I mean, as I said, Mike Collins was just pivotal in that. And I think your boss sets the tone for who you are as a professional, especially when you’re really young.
And he just always– it was always about the kids. How is this going to help the kids? Any idea you had, that was the first thing he said to you. And I never had a boss, necessarily, that said, well, that’s going to be too expensive, or that’s going to– it was more like, explain to me why this is going to be good for the kids. And then they would figure out how to get it.
I mean, I remember Mike Collins. We went to him at one point, my teacher’s aide and myself, and said, wouldn’t it be fun to take the kids camping? So we took the whole Deafblind Program camping.
Coit: Wow.
Mazel: We all went to Waltham, which was a Girl Scout camp. I think their school was a Girl Scout camp in Waltham. But there must have been 65 or 70 kids. And we took everybody camping, which, it was a logistical nightmare.
But we told that to him. And he was like, sure. Show me your plan and tell me how it’s going to help the kids. And like I said, he just made it work. He just made it work.
And Tom Miller was another boss that I had that– the kids might have turned three years old. But if the school program needed some support, he would let us go to the school and help that transition, even though we weren’t going to get paid for it. He was always really good. If you had a compelling reason, he was very– it was, again, it was all about the kids. So I feel very lucky in my– at Perkins, that I’ve had some really good bosses.
Ed Bosso is also the same. The question is always, tell me how this is going to help the kids and families. And he’ll try to make it work. And if it doesn’t work, he’ll give you a clear reason why, which was cool.
Coit: And then the flip side of that– what have been some of the most rewarding aspects?
Mazel: I think it’s being allowed to be creative about what was going on, being able to say, hey, I want to go camping. Or hey, I want to start an apartment program. Or I want to do more community experiences. You weren’t locked in. And maybe it was because it was a school.
And at that point, all the kids lived here. Very few kids commuted. So the community programs or community experiences were just built into the day because the kids went back to the cottages from school, and then were out in the community a lot. So maybe it was because of that that you could really be creative about what you were providing them around communities and just being sort of a 24/7 educational system for those kids.
Coit: Yeah. Yeah. I mean, it’s a full experience.
Mazel: Yeah. So the downside was, I mean, there were families that had to make the choice at five years old to let their kids come from Nevada to Perkins. And again, at the time, I didn’t appreciate it till I was a parent myself. It was like, wow. Because there was nothing in New Mexico or nothing in Vermont for their children. But can you imagine? That was the choice they had to make.
And at that point, when you wanted to be in the Deafblind Program at Perkins, you had to come and interview, and they test you. It was harder– one of the parents said to me, this was harder than getting into college when you came to Perkins. It was hard–
Coit: Wow.
Mazel: –because there were so many kids and so few spots. So it was tough. It was tough.
Coit: And that was because of the rubella epidemic?
Mazel: Exactly. Yeah. There were just so many kids.
Coit: Wow.
Mazel: Yeah.
Coit: So you’re in the CVI Center now, which is a relatively new center at Perkins. Can you tell me a little bit about how it came to be and where it came from?
Mazel: Sure. Sure. As I said, I came to Perkins. And what they said at that point was, we think we have about 30 kids with CVI on campus. So that’s what I came to Perkins to do was I was going to look at these 30 kids. I was going to do assessments. And then I was going to help staff understand CVI, and then help their educational program. That’s really what I thought my role was going to be here.
And it quickly became clear that we had many, many more than 30. And part of the reason that I think it was underestimated is lots of the kids have ocular problems also. So nobody could see the CVI because of the ocular issues.
So working with the low-vision clinic, we kept getting more and more and more kids with that diagnosis. And then working with the low-vision clinic was really great for that because I could say, here’s what’s going on functionally. And they would say, oh, yeah, that’s enough for a diagnosis. So we kept getting more and more kids.
And then I think it was really Ed Bosso that took what I had at that time, which was a more narrow mindset that we were going to serve the kids on campus. And he was more about, let’s serve everybody around CVI. Let’s think about increasing everybody’s knowledge, not only on campus, but off campus.
And so he– I think it was in November of 2018, we had a collab, which was this facilitated discussion. There were 25 CVI experts that came to campus for two days. And we had a facilitator that walked us through an engaged conversation about, why is CVI so hard to figure out? What can we do about it?
And that was so valuable to have this facilitated discussion, where there were a lot of personalities in the room that didn’t necessarily get along. But they came to consensus around lots of different issues. And I think that was kind of the seeds of Perkins saying, OK, here we’re understanding the problem a little bit better. How can Perkins be part of the solution? And so I think that was really the very beginning. From that collab, we came out.
And then there were working groups. So the medical research working group was working, the assessment working group was working just to, again, further the understanding. And then we got that big grant to plan a CVI center. And we did that planning over a year with an outside consultant. And that created our current structure.
So we have different pillars. So there’s one parent advocacy pillar that we’re concerned with, one assessment pillar, assessment and research. There’s on-campus programming and assessment. And then there’s e-learning. So those were the pillars that came out of all that.
So that’s what currently the Center is around, those four pillars. And then under those pillars, we have hired more and more staff. So now, every program has a CVI coordinator that works with the kids that are on Perkins campus, doing assessments and helping the staff make changes to their classroom or to their educational materials based on what the assessment is. So that’s fantastic.
We have CVI Now, which is the parent Facebook page and information that’s just really sharing so much of what we’re doing on campus with the wider world. And that pillar is really, really doing so much, as is e-learning, around CVI.
And I think we’re changing the conversation because I think those, the collab and our working groups, took what we thought we knew about CVI, and really broke it open. And we listened to everybody who’s talking about it, and then distilled it to what we really pay attention to, which is 16 visual behaviors. And those are the building blocks of our assessment and program planning. So that was why we’re where we are.
And I think we’re ever changing as we learn more and more about CVI. I think there’ll be more and more information to share. And maybe certain things are debunked. We’re paying attention to the research. That’s I think a real strong commitment we have is to pay attention to the research that’s currently happening, what’s changing out there, and be flexible enough to change with it.
Coit: That’s great. So those are all the questions that I have. But is there anything that you want to tell us or that you think it’s important for us to or anything like that?
Mazel: I spent more than half my career here. I think I’m 20-something years, even though I’ve left and come back and left back multiple times. I wouldn’t have traded any of those times away from Perkins, because I think it’s made me appreciate Perkins.
And I think that that’s never to be forgotten, that you have the resources. You have the expertise. Lots of other places don’t. And so use it wisely.
And so I’ve appreciated that very much, that time away, and appreciated coming back, and in all the different kinds of roles, too. I’ve not been one thing my whole life, even though it’s been around a few departments. It’s not been one thing. So I love learning.
Coit: Well, and I think that that’s something that’s special about Perkins, is that it seems like there are quite a few people who are not just one thing. You have people who are working in human resources who started as TAs. There’s a lot of different places you can go.
Mazel: Right. Right. And the research library, just thinking that there are people from all over the world tapping into what’s in the library, because again, it’s the expertise. That library is filled with information that’s really relevant to the kids with visual impairments. And there’s no other place like that, really. Libraries have different focuses. And just having that on a campus like Perkins is just amazing. So amazing.
Coit: Great. So if that’s all, I’m going to stop the recording.
