Accessibility Matters^™ Episode 3: Susan Gordon-Ryan

Transcript for Interview with Susan Gordon-Ryan

Webcast interview hosted by John Griffin, Publisher of Accessibility.com, featuring Susan Gordon-Ryan. John and Susan are in separate locations and the interview was conducted over video conferencing. The speaker is on screen at any given time.

[Introductory chime accompanies 'Accessibility Matters^TM' animation on screen, briefly. Music accompanies 'Episode 3' on screen, briefly]

John: My guest today is somebody that I have known across the years. And she’s had this extraordinary life. She was an early victim of polio. There’s no sense in going into anything else. Let’s just start with introducing you to Susan Gordon-Ryan. Susie, it’s good to see you. And thank you so much for being here.

Susan: Thanks for having me.

John: Let’s start with your beginnings. You were too young to know, so what happened?

Susan: Well, my family -- I was the oldest of six children, so I was the first and my parents lived in South Ozone Park in Queens. And evidently, from what I remember, or from what I was told I was 18 months old, had a very high fever, my parents took me to -- had the local doctor come over to the house. And he said, “We’ve got to get her right to the hospital. I think it’s polio.”

So, they took me to the hospital in Queens, and immediately diagnosed me and then said, “She’s got to go to St. Charles Hospital out in Port Jefferson, she’s going to be there for two years. We don’t know what the prognosis is.” But at that time, I was able to walk, I was 18 months old, but I couldn’t move any of -- I couldn't move my body. So, I went into rehab at St. Charles. They did all kinds of physical therapy, I had the bracing, the corset brace all the way up to my chest, two crutches. Ultimately, I was affected in both legs and my left arm. And the prognosis wasn’t good.

They said to my parents, “She’s never going to be able to move around, so you might want to think about keeping her in the hospital forever,” which my parents never paid attention to. They always sought alternative opinions in terms of how to deal with the polio.

So, for two years, again, I had intensive physical therapy. I would only see them on weekends, which is amazing when you think about being a little baby from one and a half to three and a half, and only seeing these two people on weekends throughout that time. And then in the meantime, my mother had two other children. We were all 18 months apart, the first three of us. So, I can’t imagine what my parents were going through, driving at that point from Queens all the way out to Port Jefferson on, you know, I think the only road back then was 25A, or I assume. So, it’s incredible the amount of time that they spent with their normal lives and then taking care of me.

So, anyway, after two years, I was three and a half, they took me home, back to Queens, and it was a whole new world. They had to ambulate getting up the brick steps in the house in Queens with the crutches. So, that was one aspect of it. And then there were two siblings that I didn’t know when I came home, and they didn’t know me. So, it was like a lot of different challenges early on in life.

I continued through with therapy all through my childhood. But my parents moved to Nassau County. And the first thing I remember about accessibility really making a difference is when I was five, my parents, my mother took me down to the local public school and wanted to register me for kindergarten. And they took one look at me with the crutches and the braces. They said, “We can’t take her in school. We’re not equipped.”

So, she took me right to St. Aidan’s Church and the school in Williston Park which is where we lived and they took me right away. And one of the issues was that I was a year younger than everybody else in the class. So, as I went through grammar school, I remember being out for different surgeries. Or from the time I was three till I was about 11, I had 11 orthopedic surgeries. And it was different protocols where they wanted to eliminate the bracing. So, I would have tendon transplants, muscle transplants, bone straightening, a lot of different things that were normal protocol back then for polio patients.

And eventually, I was able to get rid of the bracing completely and used one crutch. But I had huge gaps in my education because I would be -- I was a year younger and then I’d be out for surgery so I would miss half of the school year. And then go back and never got left back. I didn’t want to be left back and my parents always -- my wishes with that even when I was little.

Anyway, I graduated from there. I went to Catholic High School, which was a challenge because I went to Sacred Heart in Hempstead. And academically, I really wasn’t ready for it at that point, I don’t think. And I also, I got tutors and everything, but that was not easy. Then I went to school to St. John’s University. I wound up becoming a teacher, which is my point that it’s amazing that I became a special education teacher, got my Masters. Part of my Masters, I went to Oxford University, and the University of Grenoble in France.

So, it’s amazing. You kind of get through. I just always with the polio, I think I was always kind of running ahead of it. I never really thought about, well, if I do this, my disability is going to get in the way. I was able, again, to ambulate with the use of my one crutch. But I traveled all the way through college, when I was -- I was a teacher for 11 years. And every vacation I was either in South America, Oxford, France, all over Europe. I traveled all the time and it never really interfered. But I managed. I guess I couldn’t let it in. I don’t know.

I go to a post-polio doctor and he said that when you acquire a disability, you develop an A-type personality. It’s very common with polio because you get polio, all of a sudden, you’re paralyzed, you can’t do the things that you could do. And then for two years, you’re absorbed with physical therapy, occupational therapy, nurses, doctors, you have kind of a team of people helping you. But the message is always you have to get back to normal, but you really never can.

Once you got polio it was permanent. It affected different parts of your ability to use your muscles correctly. So, I developed that A-type personality. I just always ran ahead of the polio.

John: I mean, yes, you were ambulatory, but did that help you in Spain or France or South America? How did you run into things there? And so like, I’m assuming that it was a level playing field across the world, but it probably wasn’t.

Susan: It really wasn’t. And I think that what I learned individually is to advocate for myself, and I would say, I think it’s probably easier to explain, like, when I went to high school, one of the things I knew I couldn’t do, was to be on the stairway in the middle of classes because the kids were running up and down the stairs, I couldn’t do that. So, I would get the key to the elevator and accommodate -- I knew how to advocate for myself and to ask for help.

And in college, St. John’s was a big campus, it was very hilly. And what I did that is that I tried once or twice walking long distances from the parking lot to wherever I had my classes. And that was just too much for me. So, I wound up asking them if I could park in the circle right in front of the -- Marrillac Hall was the major building then. So, I was able to do things like that and use the elevator. I had the keys to the elevator, at St. John’s.

So, there were individual accommodations that I knew how to access and I was comfortable enough to advocate for myself. When I was traveling, honestly, I was able to -- I mean, you develop a sense when you have a disability of what you’re able to do and what you might want to try to do. And honestly, I was very good about asking for help when I needed to. If something was not accessible -- it wasn’t accessible, I didn’t fight with it. I mean, I remember I was in Peru in Machu Picchu. And I climbed up a lot of the steps but then there were other steps I couldn’t do. So, you sit and you appreciate the beautiful mountains in Peru. So, it wasn’t as -- I don’t ever remember all those years when I was traveling all over the world where I ever got into a situation that was dangerous or untenable for myself.

I was able to really kind of size things up. You just develop that sense when you acquire a disability. I had a sense too of that with having friends or my siblings help me with certain things. And it was just part of how I got around all the time. It wasn’t something that was manipulative or, you know, uneven with relationships. But I was able to always do that. I was always very lucky with people that were around me. I mean, if you have a disability, it really takes a team. You know, it takes a village. And I was always able to easily navigate that.

I was very fortunate. My parents taught me that. I have wonderful, wonderful parents. Now when I think back when I was younger, and I was 20-21, and I’m telling my mother, I’m going to go -- my parents -- I’m going to go to South America for six weeks. They never stopped me from doing anything. They really didn’t. They were always supportive. I never remember them saying, well, then maybe that’s not a good idea for you. It was always like, that’s a good idea. How are you going to plan it out? And I did. So, I don’t ever remember, as a young person being limited.

I did go through the regular adolescent things where you think, oh, I didn’t get invited to that. It’s because I use a crutch. I didn’t get invited to that prom, which was silly. I went to more proms than anybody else did. That fits into the scenario that any normal adolescent is going to.

John: I remember well reading some of your mother’s poetry. And one, she focused very much on the challenges that you’re describing and her feelings about it. And one line stays with me. “I gave you wings, now use them.” So, you’re right. I mean, you had a partner in courage -- you had partners in courage.

Susan: I did. They both were great, my parents. I remember one time I got -- the Beatles were coming to Shea Stadium in 1964. So, one of my friends couldn’t go so she gave me the ticket. And I was so excited. So, my parents said, “Oh okay, you can go to that.” And I went with two other friends and dad dropped us off and picked us up and waited outside. And they never said no, but I remember my mother when I was much older said, “Do you know I called the New York City Police? I said my daughter uses a crutch.”

And he said this about 50,000 kids that are in that -- girls screaming at the Beatles at Shea Stadium, it would be impossible to find her. But she never let me know she did those kind of things.

John: You moved through university, you went across the world, you met Frank and said that’s next.

Susan: Right. Right.

John: So, tell us a little bit about how it was as mother, wife, housekeeper.

Susan: I became a teacher after I graduated from college. And I worked at the Henry Viscardi School in Albertson, which is a special ed school for children that are orthopedically-disabled at that point, now they’re multiply-disabled. But I taught there for 11 years. And when I was in my late 20s, this handsome other teacher got hired and we used to have lunch together. And I knew immediately I liked him because I used to go on three dates, that was my three date limit with guys when I would date them. After three dates, it was like no, I don’t want to go out with them.

The minute I met Frank, this is the guy. This is the guy for me. He’s very positive. He was fun. So, we taught together, that’s how we met. And then I left teaching after 11 years and went on to work in, in government and state parks. And Frank stayed for another two years, but we got engaged during that period. Got married, I was early -- 33, so was he. And we just again, just navigated everything. I mean, I had a beautiful relationship with him. We have very like interests.

We don’t have like personalities -- really complements. He’s got way high energy and I can’t do everything that I used to be able to do. But we complement each other in terms of our sense of commitment and interest in other people, interest in our community, interest in our children. So, it’s really been -- we’re married almost 39 years. But we just had a great -- we’ve had a great run.

We were teachers first and we were both in government. And then I went on to not-for-profit field and Frank stayed in government and retired from there. And then we have two beautiful children.

With post-polio too, I remember when I got pregnant with our son, I was 38, which is not young to have your first child. And I remember going to my gynecologist and I asked her what -- I said with post-polio, what do you think about carrying the child and natural birth or cesarean or whatever. And she just looked at me and she said, “You know what, I haven’t gone through this before either.” She said, “We’re going to monitor you like we would monitor anybody.”

And my pregnancy was wonderful. I was able to walk the whole time. My weight was normal weight gain, I felt great. I worked up until the Friday before Shane was born. So, I, again, was lucky to have a -- pick a doctor that would work with me according to let’s not jump into making a decision that we’re not going to do natural childbirth, we’re going to operate right away. So, I was, again, very lucky there.

So, our son was born when I was 38, and then my daughter, she was born when I was 42. And both of them are beautiful, healthy young people. And you know, we’ve had a great run with the kids too, really good people. They’re now 33 and 28. Both hard working wonderful, good, good, solid adults, and we’re very proud of them. So, we’ve had a good -- Frank and I are very complementary in terms of our personalities and our interest in many different things. So, it’s been a good run.

John: You mentioned that you moved into government [Susan: Mm hmm]. You moved into government and you took on a task that has left a legacy behind you. You learned what accessibility could mean to people not as fortunate as others, and you used that interpretation to create what became known as the Empire Games, which was an early adaption to Special Olympics, which is -- suddenly the improbable -- the impossible became very possible.

Why don’t we go back to the start of that and what incented you to do that? What did you see that needed to be done, and how did it unfold?

Susan: I started -- After I left teaching, I got a job with the New York State Office of Parks and Recreation. And my job was to be -- I was a special assistant to the commissioner and I worked on special projects. So, I did several different projects. And then one of them coming up was I was the liaison for the Paralympics that were held in Nassau County in 1984.

Paralympics are held a couple of weeks after regular Olympics now and it’s an international Olympics for people with physical disabilities from all over the world. So, Nassau County was the host and state parks had several venues that were available for the Paralympics.

So, anyway, I worked on those. And at the opening ceremonies, Ronald Reagan was -- he came down in a helicopter and he and Governor Mario Cuomo was at the games too, this big opening. It was very exciting and it was just a wonderful celebration of all these athletes that came from 54 different countries from all over the world, obviously. So, I worked on those and did many, many different things for the Paralympians that were here over a two week period. They had the equestrian events out at [inaudible]. They went to Jones Beach, we took them to activities in the city.

Anyway, a few months after that, there was a line item in the budget, and it was for New York State Disabled Games. And I remember my immediate boss came running in and he said, “Did you ask the governor for this money?” I said, “No, I didn’t I didn’t know anything about it.” So, he said, “Well, you’ve got to do something with this allocation.” So, I was like, “Great.”

So, I wrote up a proposal and it was for games for the physically challenged and I wanted to only have the games for children. Because during the Paralympics, I saw all of these elite physically disabled adult athletes, that each of them got to the Paralympics through different mechanisms. There was no child -- children’s program to train kids to get into the adult sports. And honestly, from the time I grew up, I’ never ever went to a phys-ed class; in grammar school, high school, even college, I always had a study hall. I was always excused because I had a disability. But as a 10 year old, I remember over at the Viscardi School, I wound up learning how to swim. That gave me so much strength in one of my legs, they were able to do a few more operations, and I was able to get rid of the braces because of physical education. Then I started to teach yoga when I was in my early 20s, because that I found too is a great way to deal with the weakness of my left arm. And then that became a second job for me. I taught yoga for years to different populations. Then I wound up buying a horse, an Icelandic horse that was used for therapy, hypnotherapy over in Europe, and I was able to buy one and have this horse for eight years. And so I loved sports myself, but I never had any vehicle. It was always individual.

So, I designed the games around everything I never had. Because I thought, “Well, why can’t kids with physical disabilities do swim, run track, ride horses, do field events if they want to?” So, what I did was develop a program for physically disabled youngsters from five to 21. And the first year I thought, “Well, it’s a good idea. Let’s see how it goes.”

And I thought, “Well, I bought all the uniforms and everything, this is better work. I don’t want to embarrass state parks and the governor.” And we had 240 children that showed up from all local schools, Long Island and New York City. The next year, it was so popular, we went up to 700. And then the third year, we had 1,500 children, plus kids from seven other states and a team from Ireland. So, it was kind of like a field of dreams. You know, if you build it, they will come. And it’s just every year, we wound up with about 2,000 kids, and about the same amount of volunteers who come from all over the place. And it’s still going on. I mean, through COVID, we had to cancel it for two years.

But New York State is the longest -- it’s the only state that has a program like this for physically disabled youngsters and many of them have gone on to the Paralympics, which is what I designed it for. And I think we’ve probably affected over 100,000 people through this program. It’s not just, you know, the families work around it, the schools work around it. It’s like a big reunion every single year. And it’s at Mitchell Park, and Nassau Community College and Hofstra University the end of May every year. And we’ll be back next year. We’re not going to do it again this year just because of COVID concerns. But it was just a wonderful, wonderful opportunity. And I really built it out of things that I wanted as a kid that I never had.

So, I’m very proud of it. I would say that’s the -- kind of the crowning achievement of my career. I’ve had a couple of different careers, but that one has always given me the most gratitude for being a part of it. And it again, takes a village. Nobody does anything alone that’s that successful. I had such a team of people that work for me, but also volunteers and family members and coaches, and just had an incredible group of people that really every single year coalesce and come and do it for the kids. They don’t do it for themselves. It’s really very little ego involved. It’s really just a beautiful gathering every year to make these kids be the heroes for the weekend.

John: Tell us about Carl, Carl Ladenback.

Susan: He was another one of these wonderful people that came into the program early on when I did the games. This lovely -- this man called me and said, “My name is Carl Lundqvist, and I’m a retired AP reporter for sports.” And he said, “I really am interested in the games and I was wondering can I come in and talk to you?” So, I said, “Sure.” So, he made it a point and he came into the office and he was like an elderly, lovely man that was kind of a little shy. And he said, “Well, I’d like to volunteer,” and he said, “My background is sports.” And he said, “I’m so impressed with the kids that are in the games. I’d like to use my sports reporting background to help promote the games.”

So, every year, Carl would come back for years and years and years and he would sit, he would do press releases, get it out to all of the local smaller newspapers. And then it would get picked up by the larger newspapers like Newsday. And then we get picked up by TV and radio. And it was really due to Carl’s perseverance. He was just an amazing man. And he was one of these quiet, wonderful, behind the scenes individuals that had a career where he covered everything in sports; covered Muhammad Ali, he covered every major event in his career.

And I was just so fortunate to have him. And it was interesting when Carl passed away, I spoke at his funeral. And I was saying I always remember Carl would bring his old-fashioned typewriter. He would sit in the little trailer at Mitchell Park, and he’d be crying, had tears of joy. And he would do wonderful stories about the kids and different stories of their courage. And I told that story. And when I was done, his son came up to me, and he said to me, “You know, I never saw that part of my father. He was always so kind of strict with us and -- serious about things.” And he said, “It was so nice to hear that story.” And I said, “He was just like a big mush. He just loved the kids, and he loved being there.”

And he did so much for us, I really -- it’s the first time that our games, it was the first time it was covered in a sports context and not in a human interest, which really gave dignity to the kids. And then Len Berman also did it for NBC. He wound up covering it and I would phone in the results or he would come out to the games and report from the games. And Dave Sims also on FAN Radio. I would phone in how the kids were doing, the amputees and the records they broke and everything and he would cover it in a sports context, which it was just an incredible move forward for disabled sports.

John: In our discussions, you and I talked about the movement across your life, from being fully ambulatory to a time where that became more and more not possible. Maybe you could focus on that. Because here again, changing your lifestyle, [SUSAN: Mm hmm] changing your physical wherewithal didn’t remain constant.

Susan: Right. As I mentioned, I had polio as a child. And they find now that 30 years after the -- they were finding 30 years after the initial onset, that there’s something called post-polio syndrome, and everybody doesn’t get it. But after years and years and years of overusing the muscles that do work, there’s a fatigue that sets in and almost a replaying of the virus. So, I wound up in my 30s starting to feel a little more fatigued, walking long distances bothered me. I didn’t have any pain back then, I do at this point in my life, but there was a weakening that I found that sometimes was -- I could just tell I needed to address it. Like I had when I said I was never shy about asking for help. But I would get when I was at work, I had reasonable accommodations and always was very lucky to work for places that were very open to that. So, after a while, in my 30s, I started to use a cart around the office building at state parks. And I wound up doing that with all the other jobs after I left state parks in my 40s and 50s and 60s, I would use carts then.

I wound up -- the fatigue was continuing. So, I got an electric wheelchair. So, at this point, I pretty much only walk short distances. But when I was younger and I was ambulatory, I had different needs. You know, we’re talking about how accessibility matters. And when you’re ambulatory, you know, I’ll talk about myself. I was never as aware of curb cuts or things like that because I wasn’t in a wheelchair. I was able to get up curbs, it was never an issue. So, when I started to use the power wheelchair, I was -- obviously you have to have accessible, you know, ramps, sidewalks have to be accessible for you. I noticed too with even shopping, I’ve done different talks about accessibility, and I talked at Barclays Bank about this. And I said that there’s different things, if you’re going to shop, this is where accessibility matters, and it’s pretty concrete in terms of talking about it. If I go to like Macy’s, and there’s really all of the racks are close together, there’s clothes that drop on the floor, that’s not accessible for me. If I go to Nordstroms, you walk into Nordstroms, it’s beautifully designed, it’s called Universal Design, but they design their stores for everybody. It’s you know, elderly people, people in wheelchairs, people that have baby carriages. I mean, it’s universally designed for everybody, which is -- access matters for everybody, not just people with disabilities.

So, Nordstroms has wide aisles, there’s plenty of room in between everything, it’s beautifully done. If I, as a consumer, at this stage of my life, if I need it to be accessible, I’m going to go -- I'm gonna spend my money as a consumer in someplace that’s going to accommodate my needs. So, the older I get, the more I’m aware of accessibility because I have to have it now. Whereas when I was younger, I didn’t. And that’s for everybody.

I mean, accessibility matters for anybody aging too. I mean, there’s a whole senior citizen population now that are very active and vibrant and involved in things. But if it’s not accessible for them, it’s not going to help anybody. So, the older I get, the more aware of that I am. And I know that you’ve talked to Judy Heumann who was just a superstar in the disability awareness area and the ADA, the covering, or the beginning of the ADA. And she was fighting for this from the time she was young. I had a different experience because I didn’t need it as much as she did when she was younger. Now I do.

And I’m grateful for all of the people that really fought for the ADA and for the rights of people with disabilities. And it is a right. It’s not something that you have to beg for, it’s something that’s the right thing to do in society. It’s right for everybody. I don’t know, people really think about all the people like Judy Heumann or Jim Weisman who really early on, did the work and did the fighting and stayed in front of the buses. I mean, they were like the ACT UP of the disabled community. I mean, sometimes you need that kind of activism, where people know that they have a right to be on the buses, they have a right to be on the subways, they have a right to be able to get in and out of stores. And there’s a whole movement and I thank them every time I experience a situation where I see a ramp, and it’s already there for me, and we’re in a good time for that.

And society has benefited from this, it’s not just people with disabilities, it’s all of us. But accessibility matters in every level. Even now with computers and Zoom and all of the different technological advances, that’s a real positive for people with disabilities because you don’t have to be able to -- you don’t have to worry about running to the office and accommodating a physical space. There’s an opportunity for people with disabilities for more employment now than there ever was. Because there’s just a comfortability with technology and it makes it easier for you, but it also makes it easier for somebody that’s a potential employee for a company that they don’t have to -- you can hire somebody that’s totally qualified that doesn’t necessarily have to have the ability to commute every single day.

So, there’s just different areas that have become accessible that through, I think, an acceptance in society. It’s just made life easier for everybody, but it also has benefited people with disabilities. And it’s a good time for us. It really is in spite of all the craziness of the last year with COVID and everything else that’s gone on, this is an opportunity that opens up that you don’t think about. And I’m very grateful about that. I really am. And accessibility matters for all of us, not just people with disabilities.

[On screen, scrolling: Accessibility Matters, Host: John M Griffin, Guest: Susan Gordon-Ryan. Closing chimes accompany 'Accessibility Matters^TM' animation on screen, briefly]