Rory McCarthy

Rory McCarthy

Interviewed May, 1999

 

 

I was born June 19, 1954. I’m 44 years old. I’ll be 45 in June. I grew up in New Jersey ‑ along the coast of New Jersey, moved around a number of times around communities on the Jersey shore.

I don’t recall events that were going on nationally or internationally that had an impact on my early life. I remember certain major events. I remember when Kennedy was shot I was in elementary school and I remember those different events occurring, but, of course, not [any] at the time, you know, in 1954. There were some things going on like the McCarthy Hearings and that stuff during those years. I don’t recall the exact years but they probably certainly had an impact on my folks at the time in their lives.

My mother is of German descent and my father is Irish. My grandmother, on my father’s side came to this country from Ireland with her husband so my father was first generation born in this country on that side of the family. He was born in 1921. On my mother’s side, her family goes back, from, what I understand, back fairly far in this country ‑ going back to the late 1700’s, early 1800’s. So her side of the family or parts of her family have been here for some time, where on my father’s side of the family, my grandmother came over in the “teens’ from Ireland.

The interesting thing is, because she was an Irish citizen, I’ve since learned that I can get Irish citizenship, have dual both U.S. and Irish citizenship because she came over from Ireland and was an Irish citizen before becoming an American citizen, and she never denied her Irish citizenship. Ireland has this policy where they allow, if it’s a grandparent or someone more recent, that you can apply for dual citizenship. I’ve got most of the papers to do that. My older brother and I have been gathering the papers. He has done most of the front end work of getting the documentation. It’s like eight or nine documents from our grandparents’ birth certificate up through your birth certificate and all of the documents in between related to your grandparents, your parents, and yourself. Then you fill out an application through the Irish Embassy, and it allows you to get an Irish passport and it allows you to be an Irish citizen and to work there if you want. It’s not to me a matter of denying American citizenship. It is more that I would find it interesting to have the ability, if I wanted to, to live there, to work there, or do whatever. Ireland, being a part of the European Union, from what I understands it [the dual citizenship allows you to work and live throughout the European Union as if you are a citizen of one of those countries. I have always been interested in being international or around the world because of my travels, so I just have to get the forms together, send them in, and then it is a matter of months before they respond to it.

From just knowing my parents while growing up, I think there are characteristics of both of them that became a part of me. I think that my mother has always been a very determined or “stubborn” person in a lot of the things that she does, and I think those characteristics of her are part of me. They have been a significant part of these cycling adventures that I have been apart of that have taken me across country or around the world or all of the other places, such as Viet Nam. The desire to be a part of it is one aspect of it and then being committed to doing it ‑ the physical and the mental aspects of hand cycling great distances ‑ that characteristic is probably something that is more from my Mom’s side.

One story that I remember growing up. I’ve always been very curious about people ‑ talking with people and enjoying meeting a variety of different people. When I was younger and we lived along the Jersey Shore, one of the towns we lived in, where my Mom lives, and sister and her family, and my younger brother and family [still]live, there is a board walk I worked there when I was fairly young a number of times between the ages of 12 and 16. Our family and extended members of the family [who] would come visit us while they were vacationing, would go up and walk on the board walk.   As we started at one end and would be walking along and talking and looking around and everything, I would invariably be the last one to get to the other end because I would be talking with different people as we would be going along and just being very interactive with people just to talk to them or because I was curious about their experiences or their lives.

I think my curiosity about people and their experiences and the world around us sort of developed [from my surgeries]. The first time that I experienced any problem with my legs was when I was 9 years old, and I had a lot of surgery during that year. My disease is called Charcot Marie Tooth. It’s a muscular atrophy which falls in the class of muscular dystrophy, and it is a genetic disorder. It may or may not affect someone. It can affect someone profoundly or it may not affect them at all. My two brothers and my sister have no idea that this is a part of them as well, although they have it, but you wouldn’t kno0w because it can be incredibly mild. Mine was aggravated by surgery.

What they learned after the fact was that the worst thing they could do to someone with this problem is to immobilize them in a cast. And that is what we learned when I got out of the cast. None of my brothers and sisters had surgery. Mine was because of other things that occurred. We think that, some things that I have read, say that the mothers carry it. My father, when he was younger, had polio, so we are not sure. It was obvious that something had occurred when he was younger, but it was probably related to what he experienced.

I’m not too worried about my child, because of this female carrier thing, and I don’t know if that is the case. I mean there are different types of Charcot Marie Tooth. I used to think that I would not have a child because of that. I used to worry about that especially having a lousy attitude about myself and about life during isolated times. I used to think to myself, “Why in the world would I want to put a child in that position?” but I asked my brother and my sister, “Did [they] ever think about that?” All of their kids are all grown up, in college or out of college and whatever, very active and not affected. I don’t know that they didn’t get it, but it can be incredibly subtle, so subtle that you don’t even realize it. It’s like a lot of people go around with things that you wouldn’t know because it’s just not apparent.

So at about the age of 9, I spent probably about 8 months in a body cast, in and out of the hospital, and I think that experience forced me to become fairly independent because while I would be in the hospital by myself, and my parents weren’t there, when you spend that much time in a hospital, people come and go in the hospital room that you are in so you meet a whole variety of people, all ages and all experiences and you talk to them, and you learn about them. I felt like I gained skills at developing relationships or friendships with people for the length of time you are together in the room. Some would last beyond that. But I think that is where my curiosity about people and their experiences and the world around us sort of developed at that time.

I remember that because all of a sudden I was faced with a difference in myself from my peers, you know, having to have the surgery, my legs being different, being in a wheelchair for a short period of time then, and then I used crutches for a little while, and then I didn’t have to use them, it sort of forced me to have to look at the world a little differently than simply going along like everything was fine you know all of the standard things. I had to, because I was viewed differently by some people because I was “disabled”, it sort of forced me to look at things and say, “Why do people treat you this way? Why do people treat you differently? Why does society view you as being less capable because of this disability or because of this difference?” Some parts of society would look at you, if you were overcoming this thing; they’d look at you as being this poster boy, poster child, which is one end of the spectrum. And then at the other end of the spectrum are people that wouldn’t talk to or acknowledge someone with a disability, I mean, years ago. Over time, that certainly has changed and improved, but I do recall that, back then, it was very different than what I experience today and what other people, I think experience.

I think that first series of operations, when I was 9 (I had more when I was 12, more when I was 16, more when I was 17, and again when I was ‑‑ about 12 years ago) felt like it was separating me out for different reasons. There were times that I felt like I missed out on some things because I was in a wheelchair, used crutches, and I couldn’t always participate. Those times sort of forced me to be a little reflective about it and try to understand what was

happening. I tried to create a world for myself that made things tolerable, made things more interesting. Also, I think it instilled in me a realization that there were times when, for me to he acknowledged for something, I would have to work at it harder than the average person would simply to get to the same point. This doesn’t happen just to people with disabilities, it happens with cultural peoples that are different, racial biases and experiences. There are differences between men and women, things that women run up against in society. It was that sort of sensitizing me early on, I think, that was a major part of who I eventually became.

 

I had a lot of family support from my parents. They were very supportive, and I know that made a big difference because I realize that other youngsters, at the same time, depending upon how their parents reacted or what possibilities their parents saw for their children, because of the disability, they could go either way by how people reacted. [I was aware of this] in a hospital setting or in settings where a particular group that I might have been involved with involved other disabled youngsters.

One very interesting thing for me while I was growing up … I had, this “disability’, and I was different. The thing that young people want very much to do is to go along and be a part of their peers. They don’t want to be viewed differently. They want to be a part of the group. They want to be accepted. They want to be acknowledged. They want to be sought out as a friend by

someone. Anything that highlighted a difference between myself and others, I would try my darndest to sort of cover up or hide and not accentuate. I had a hard time, for a while, being with other disabled people because I felt like what that did was highlighted the fact that “Oh, you’re both disabled or all of you are disabled. You are all less than full human beings.” And that just accentuated that [the disability].

So I never, when I was younger, would have imagined marrying somebody with a disability. That was something that I don’t think would have even been a possibility for me because I don’t know how comfortable I would have been with that. I had no problem being with other people with disabilities and doing things, but it was because of the way society viewed people it was like, “You are less than a whole person.” You often are just not even acknowledged.

In looking for work, someone sees the disability and doesn’t see any capability. So for a while I would just not… I would avoid other people [with disabilities] because I was more worried about what others would think, “Oh, yeah, that’s appropriate. The disabled stick together with others.”

Today, now I do a lot of things … I have a number of friends that I do things with groups that promote different activities, sports or other things for people with disabilities. I think my comfort level is much greater than it was a long time ago. The main thing that happened for me and what I realized was ‑‑ the important thing ‑‑ was the more comfortable I felt about who I was and about my own capabilities the higher my self‑esteem was and then it didn’t matter. It didn’t matter whether I was with a group of people with disabilities if we were going someplace for dinner or doing some activity with other disabled people because I felt comfortable with who I was, and it didn’t make a difference how other people perceived me.

I know that makes a big difference in just your overall comfort level. If you feel good about yourself, then it is easier to be in circumstances where you might have felt uncomfortable at a time when you were feeling insecure about yourself. Once I got to that point about the self‑esteem issue, and I understood that, then I was able to get beyond that and a lot of things happened. A lot of opportunities came along.

Years ago, those opportunities may have looked like overwhelming obstacles. But with my different perspective, they looked like opportunities. The idea of hand cycling across country, years and years ago, when I first started hand cycling, if someone had suggested that, I would have thought, “I can’t do that It would be impossible.” But as it occurred later on, to me it was a very exciting possibility from the physical challenge, the mental challenge, the emotional challenge, and the accomplishment. Not knowing before hand whether I could do it or do half of it, whatever, then my perspective sort of changed with that.

[The change in perspective] was gradual, and it was probably more recent than I would have preferred. In other words, the stubbornness and determination was always there, but it was harder because it required a lot of energy on my part to do those things, and when I realized about the self‑esteem issue, [and realized] if you’re not constantly fighting [insecurities], it takes much less energy to, get something accomplished. If daily activities and daily interactions with people are a great, great effort, it’s exhausting. And, again, it’s sort of tied to self‑esteem; sort of tied to, comfort level.

I think I began to feel more comfortable with myself probably 15 to 18 years ago. Part of it was that I had some real difficult times emotionally. In other words, it was sort of like a catharsis dealing with depression, dealing with physical difficulties, and discomfort and pain. I sort of reached a point where it became very, very difficult, and I, through the help of some friends and others, was able to get beyond those difficulties and get more to the point of where I wanted to be about feeling alright about who I was ‑‑ not viewing myself as me as one part of me and my legs as another part of me that I just ignored and didn’t acknowledge. So about 15 years ago, things began to change for me in that way.

One interesting thing that really helped, and it is tied to the self‑esteem issue is the whole idea of having an opportunity to be active, whether a recreational sport or something, but being physically active can really enhance your quality of life for someone with a disability. I mean it can enhance anyone’s life, but when I first learned about hand cycling, this great change started to come about because I realized I could get out and I could do things. I could go places. It was on something a little bit different, but, you know, it offered me a freedom that I hadn’t felt before because just getting from place to place took so much energy, and was sometimes incredibly, physically uncomfortable.

So when I learned about the hand cycling, there was this freedom that I had when I was younger. When I was a teen‑ager up through the ages of 15 or 16, 1 used to race my bicycle everywhere. I used to go for 30, 40, or 60 mile rides with a friend, and when you’re 12, 13, 14, 15, that’s a lot. When I was a youngster I would, like, travel from here to Portland and back. It was that freedom … and that was coming off of some of the early surgery where I was stuck in bed and in a body cast, feeling imprisoned, so when I got into cycling, I just took off.

Then, when I was 16 and had a lot more surgery and things went very badly, and I got out of the body cast, was in a wheelchair, had full leg braces, and I lost a lot of … I mean I walked into the hospital to have the last group of surgeries when I was 16, and I came out in a wheelchair, so it was like … It was pretty traumatic emotionally. From age 16 to my mid‑twenties, when first heard about hand cycling, there was like a period of time where I was having a lot of hard time figuring out, “How do I deal with my disease? How does it affect my life? Is there any possibility of being involved with a woman?” All of those things, I felt like for me, were just on hold or weren’t going to happen. So then when I learned about the hand cycling. I learned I could go places.

I got my first hand cycle in 1980 or 81. In 1993 I participated in a 24 hour bicycle marathon down in Central Park in New York City. Just to realize that I could do something like that ‑ I cycled about 18 out of 24 hours ‑ was like, Wow! I can do some unusual things! Then I did it again the next year. Then in 1985, 1 went on a cycling trip to China for three weeks, hand cycling with a group of other cyclers, part of American Youth Hostel. I knew that that was where some of my focus and my energy wanted to be because I realized that I was curious‑ about the world outside of where I was living, outside of the US, outside of the state that I was living in. That sort of motivated me to get involved in these types of things.

Part of it, and this relates back to the self‑esteem issue is that I do a lot of presentations to groups about the rides that I have been a part of, and I often start off by introducing myself I explain that I use the crutches, and I explain why I use the crutches, and I say that I am “disabled,,” (and it could be an audience of students that are high school or junior high or it could be a non‑profit organization, or a fraternity group) I’ll say, “Though I use these crutches, and I am supposedly ‘disabled,’ I’m probably, in many ways less disabled than most of the people in this audience, strictly because I have been able to understand and not self‑impose obstacles on myself.”

Most of us, and I am not an exception to this, but most of the greatest obstacles that we face in our lives are the ones that we impose on ourselves where we think we can’t do something or we think that would be impossible or that would be too much work or that would be taking too many risks to think about doing that. Those, I think, are greater disabilities than what people deal with physically because, often, physically, they can work around what it takes to do the things they need to do in everyday life. The self‑esteem and the self‑ imposed obstacles are so closely tied so getting to that point, where you realize you present the greatest obstacles to yourself, you know, getting around that was a pretty important discovery for me.

I remember dating a girl when I was like 15 years old, very briefly. I met her at the beach, where I was working, on that boardwalk, amusement area. It was sort of my first date. It was a time just before I ended up going back into the hospital. The interesting thing for me, related to dates or to girls, whatever, I felt like, because of my legs, that that would not happen because I was different, because a girl would want somebody that was whole. Those would all be very   important things from their perspective. I sort of put that in my mind that that was what they wanted so I sort of, you know, didn’t think that that was going to happen. Not realizing at the time, and learning later, there were girls that were interested. I was incredibly shy and also very insecure because of the issues with my legs. This [my first date] was an alright memory, I think, as they go. Again, being incredibly shy … it was alright.

 

My legs affected my way of thinking my way of looking at the world. It affected everything. I couldn’t separate myself from my legs, mentally or physically. They were there and for a long time it was viewed as something very negative so that presented a lot of challenges in the daily activities that kids and young people do, dating, going to school.

[After that first date] I did a little bit with that one girl, and then I went back into the hospital, and what that did was sort of put all of that on hold. I missed all of the dating as a junior and senior in high school I didn’t really do any dating again until I got to college, actually.

My junior year of high school I spent a good part of it in the hospital, in a body cast, from a number of surgeries. Then, in my senior year of high school I came back and because things [in the hospital] didn’t go well, I spent [the year] in a wheelchair, full leg braces, and stuff. My high school could [accommodate] me. When I was in my junior year and in the body cast, they had an intercom system set up to connect me to the different classrooms, and they would take this intercom from classroom to classroom and that would connect me back at home so I could sort of be there. They were fairly accommodating. It made a big difference.

Just a month ago, I was inducted into my high school Hall of Fame, and it was sort of interesting to go back there to see teachers and talk to people. Last year was the first year that they started it, and this year, they selected seven people, and I was one of those that were selected. It was good that they were able to find me.

I dated [in college], and I dated off and on. I was in and out of different relationships a lot. A lot of them were short‑lived because of my not having dealt with my own issues relating to my legs. My insecurities would show up in a relationship. A lot of them were sort of doomed because, mentally, I didn’t expect them to last because, again, I felt like I wasn’t this whole person or that’s how I felt at the time or when I look back on it. I didn’t anticipate they [relationships] would work so in my mind I was sort of ending before, and then they would end it, and I would say, “Oh, the reason was because I use crutches or whatever. I’m a lot different. Obviously this is the logical reason.” So I would blame it on that and then if it wasn’t really the reason, I would still blame it on that. So, I went in and out of a lot of relationships.

At 33, {I married], and it was someone I had known from high school. The interesting thing was two things I thought about her. One was that, here is someone that knew me before, before I was disabled, so I thought she knew me as this whole person. She knew me as I was. She knew that there was somebody there.   I thought that seemed to be a good foundation for the

marriage. That was sort of the assumption. We were married for, like, three years and then got divorced for various reasons. I was married from age 33 to 36.

I honestly didn’t think I was going to get married, I mean, I honestly didn’t think I was going to get married again because of my perspective and my issues about … I’ve had a lot of relationships. I’ve been very lucky, very, very fortunate. I mean, fortunate in that I’ve had the opportunity to know and enjoy a lot of different women, but they didn’t … they would last a little while. Some of them I would end.

 

Something that would happen and I had this very similar experience with my [present] wife prior to us meeting was that, often, I would not be looking to meet somebody, but somebody would meet me and sort of pursue the relationship. It was often that way, that I would get asked out. Or I would meet somebody, and they would say, “Would you like to meet for tea?” or whatever. And that was how the majority of them got started. For various reasons they wouldn’t last, either it was not something that I wanted or whatever. 1 never really thought long term because I just didn’t think it was going to work out. So I had been just dating until last year when I got married [again].

My first significant experience with mild depression occurred several years before my first marriage. I did a lot of reading about it and tried to understand what the source of it was. I talked to counselors. I believe it is true that it can be tied to events to your life, things that happened a long time ago. I think there are, somehow, there are cycles that come along where this traumatic event happened. And for me it could have been the different surgeries or disappointments when I was a teenager and couldn’t walk anymore without the wheelchair or the crutches. Those things happened and had a big impact, but I sort of postponed really experiencing and dealing with that until a later time. Depending upon where you are emotionally in your life or whether you are in a relationship or marriage, whatever, you know, you can deal with those things in the background or you can’t deal with them in the background.

When I was about 30, 1 was at a point where I was at, “Oh, my God, this is all pretty overwhelming, and where am I headed, what am I going to do with my life?‑” At that point, my resistance was down or whatever., however you want to view it, and it was just overwhelming. That was before I got married. [After I got divorced] I had another little period of time just dealing with understanding what happened in the marriage, but it wasn’t like the experience that I had [initially].

[Educationally] I graduated from high school and went to college for three years. I was a math major when I left. In college, I had changed my major several times, didn’t know what I wanted to do and didn’t finish.

I did different things. I was a potter for a while. I worked at Georgetown Pottery. I worked in the Bath school system for a while and did a variety of different things before getting into what I have been doing now. Back in 1980‑81, I started working for a consulting engineering company. At the time, it was in Freeport. I did computer work, drafting, and electrical design, so that is sort of where my latest direction started. I did that for a while and decided that I was going to get a degree in electrical engineering, so I have been working on that part‑time at USM. I’ve got, like, three or four courses left, so I am still working [on it]. I have all of the electrical engineering courses done. It is just a matter of getting other little things I’ve got to take done.

I’ve been working for myself for the past three years, as a consultant, doing electrical design working with office engineers. My two brothers and my sister all have at least their Master’s in different things. And here I am with one degree. All of our lives have been very, very different, and I honestly don’t think that I would trade bikes and what I have experienced for a degree.

[As far as the best job], I have enjoyed the pottery a lot because of the creative end of that. I’d done it before [worked at the Georgetown Pottery], and I worked there for a year or two. Then he had to let myself and another [employee] go one winter, and I had to look for something different. The pay wasn’t that high. So that’s when I started looking for other things, and I

 

 

worked at the school department as a teacher’s aid, worked in the Special Education Department at Dike‑Newell elementary. Again, the pay was terrible and there was no summer or vacation pay. And then I had to leave that and then I got into what I’ve been doing, consulting and design for 15 years. There are definitely sometimes that I enjoy it and sometimes I feel like doing other things, but overall I’ve enjoyed it. There is a lot of interaction with people and things like that.

[Going into a strange situation where others must look to you for guidance such as in a presentation, how do you handle this with your disability?] It sort of goes back to the self‑esteem and having a handle on that and developing some beliefs in just how to be with people and being prepared. Whether someone is disabled or not, if you have to go and talk about something or present something and do something,‑being prepared is probably the most important thing for whatever you are doing. And then, you know, dealing with how your disability is perceived or how you might feel or think you are being made to feel becomes secondary.

For me, the hand cycling that I have done has really made a big difference for me because it is like, if I go someplace and, you know, with some people, and they say, “What did you do, fall down skiing or whatever?” or did you do this or do that, and they think, they think … they look at you and see the things that they think you can’t do. It is always interesting…. I mean I don’t go around flaunting it or saying, “Oh, by the way, I’ve done a few interesting things, and you think you’re a pretty hot shit, and you’ve got. ..” It’s neat for me to have those accomplishments as part of my life behind me because, I know that I can do things like that I know that those things are possible, and I know that they are possible for a lot of different people.

If someone meets me and sees me and doesn’t know about those things, and then they sort of come out in the conversation or one of my friends is there and says, “Oh, by the way, do you know what he’s done?” or whatever. You know, that happens. Or they’ll say “Didn’t I see you somewhere or in the papers.” And, before I forget, this Saturday (April 17″‘) on NBC from 4 to 6, there is going to be a rebroadcast of a two‑hour special about the ride that I was a part of in Viet Nam. That was broadcast last December, and they are going to rebroadcast this nationally on NBC. They [people] are going to see me and see the crutches and see my walking down the street or whatever, and it is fun to share that with them. Then their whole perspective changes.

While working out on my hand cycle, I get all different reactions. In fact, I get some, “Wow! That’s really neat. That’s really cool. That’s interesting.” I go out often on the pike path. A lot of people have seen me around with the hand cycle and some people haven’t. I was [recently] going down the bike path, and this family was walking along, and I went by them. I went all around Brunswick and went over to Freeport and came back and I was back on the bike path, and they were coming in the other direction at this point. I had been gone and done another 12‑15 miles, and I’m going by in the other direction and they said, “Wow! You went all the way to the other end of the bike path!” And then it’s always fun to surprise people that you can do a lot more than they think you can.

 

I’ve done slide video presentations, about 70 in the past few years since the World Ride, and I’ve done a bunch about the Viet Nam ride. It is always interesting to go to a school and do a presentation for about 600 to 800 students. None of them have any idea why you’re there. Someone or teachers have arranged it. Then I am introduced, and I start to talk about what we did, what we were able to accomplish. I show them the hand cycle and show them how neat it is, and what it can do, and it’s like their whole perspective turns around. It’s like you’re someone with a disability, and it’s possible to accomplish some pretty neat things.

[With regard to his prominent status in the community] Well, my wife Catherine, runs into that a lot. You know, it’s like I feel badly because, she’s obviously pregnant, and she’ll meet somebody or know somebody, and they’ll ask who her husband is, and they’ll say, “Oh, you know him?” And, you know, sometimes she says, “I’m getting tired of hearing about you.” But, it’s funny in a nice kind of way.

[The interviewer discussed the amount of public relations articles he must have.] In terms of how much cycling I’ve done … Since I’ve started hand cycling, I’ve hand cycled roughly over 65,000 miles, pedaling with my arms, over the years. I [stay in shape] just doing that and walking around with the crutches. I used to belong to the “Y” years ago and did a little training, but I would say most of it is from the cycling, itself. Then I also belonged to the World Gym that was at Cook’s Corner, and lately, it has just been doing the cycling.

Last year I competed in the first ever National Hand Cycling Championships out in the Midwest and also then went to the World Disabled Cycling Championships that were held in Colorado Springs, Colorado last September and competed there for the first‑time hand cycling. I’m on the Board of a newly formed organization of the US. Hand Cycling Federation, and we’re sort of getting the whole race thing together and all that kind of stuff, which is kind of neat.

I learned about it [hand cycling] when I was about 25. 1 really missed cycling because that was such an important thing and I hadn’t been able to do it for eight or nine years at that point. I started checking around, and I learned that there were things called hand cycles. There were very few, like one or two companies making them. There was a company out West that I learned about that was not a very good design. Then I wrote to a couple of bicycling magazines, and one bicycling magazine recommended that I write to this professor at Massachusetts Institute of Technology, who was into human‑powered vehicles, such as cycling and other ones. He wrote back and said, “Oh, I’ve got a student who is working on his thesis for his degree, and he is designing a hand cycle.” So I wrote him [the student] a letter, and I got a letter back saying, “You’ve contacted the right person. I know a lot about hand cycling, and I’m starting a company”, and so on. So I went down and tried the hand cycle and absolutely loved it. The first day I went out and did about 12 miles, which is a lot for just getting on.

That fellow, Bill Warner, was the person that really got me into it. I bought his fourth hand cycle. He and I have been very good friends ever since. I was the Best Man at his wedding five years ago. He has totally changed my life. He has been very supportive of me and the different adventures. My different trips have been awareness raising trips, and they have needed fund raising from different organizations to promote the whole idea of inclusion of disabled and able‑bodied athletes doing things together. As part of the fund raising,, he [Bill] has been very supportive.

 

[As for my religious training] my Dad brought Catholicism to [my parent’s] marriage. My Mom brought ‑she was a Protestant, and I don’t know what type of Protestant she was. They got married, she converted to Catholicism, and she was probably the most devout churchgoer in the whole family. It was important for them to have us go to receive first Communion, have confirmation, to attend church and do all of the things.

For me, when I was younger, I was more math and science oriented so I naturally asked questions about things, and I had a hard time just accepting traditional, religious practices and beliefs. So early on when I was 11 or 12 years old, I was asking questions about it, and I had a hard time accepting a lot of what was practiced and what was preached to the other people when they went to church. I saw a lot of hypocrisy about things, and I couldn’t understand why, if someone was divorced and the marriage hadn’t been annulled and they got married again, that they were basically an outcast in the church, though all that had happened was that a. marriage hadn’t worked out. It was all of these different things that I just had a real hard time with, and plus with the idea of science and the study of the world around us, evolution, I sort of drifted away.

I talked to my Mom about it, and she understood my feelings and beliefs. We still occasionally talk about it. We feel differently, but she is accepting of my perspective, and I am accepting of her perspective because of what it offers to her. If it offers her comfort, community to belong, and she volunteers, those are important things [for her], but for me, they are not. So back to the question, [religion] was important up to a certain age, and then I sort of moved away from it, and my Mom stayed with it.

[Spirituality] is an important part of my life. I am in great awe of this whole thing that is happening around us. I don’t believe that we truly understand what is going on. I honestly don’t. I think …. If you believe or look at evolution or just what we have learned through scientific observation or astronomy, we are just a tiny flash in the pan on this tiny planet that religion has developed this perspective that we are the center of the universe. The more we learn the less likely that is. So it’s like, I think we may find over time, it is not what we believed or what particular religions have believed.

Spiritually, I feel like I’m a spiritual person. It’s important how you treat people and the environment and things around you, but I don’t have the traditional religious beliefs. I think it would be more important to be open, honest, and sincere with somebody than worrying about whether they went to church on Sunday or because they’re Jewish [think], “Oh, that’s not good.” because this person is a Catholic and one doesn’t accept the other. Most of the conflicts and wars in the world, many of them were based on religious differences, so that makes you wonder what this offers and brings.

I have a concept of [a higher power], I just don’t know what it is. Like I said, there is a scientific, mathematical part of me, and there is also an artistic and creative part of me, which is kind of interesting in bringing the two of them together, but, as I said, I am in awe of it. I don’t have a big understanding of it.

 

I am always fascinated by new things that I learn, like today on public radio, they talked about the discovery of another solar system similar to ours with a sun similar in size to ours and two planets. But, again, I don’t think we are the center of it all. The only reason we are the center of it all is because of what’s in our heads ‑ our brains, and our looking out around us. Logically, we would make us the center because we are basically taking all of this in and evaluating and trying to make decisions. I don’t necessarily think we are any better than a gazelle. We are all just part of what’s going, and it’s a matter of gaining an understanding such that it makes some attempt to have it all work together.

I don’t know if my inner strength comes from a spirituality. It may come more from experiences, from support from my parents or from friends. I don’t know where it comes from or whether circumstances would have been different for me. I mean, my life could have been entirely different if I hadn’t had the problems with my legs. In fact, I’d be almost positive it would have been entirely different. It is interesting when I think back, if this one thing had been different ‑‑ the impact that it would have had on my whole life. It probably would have been pretty dramatic. I think being faced with some of those questions about acceptance, about society, those sort of contributed to who I am or whatever inner strength I may have.

One thing that I do remember when I was younger and I still think about it, and I think, in part it has sort of come true … when I was around 11 or 12 years old, I remember going somewhere with my mother and father, and we were talking about things, like “What are you going to do when you grow up” type thing. The one strong feeling that I had, I mean it wasn’t necessarily that I was going to be a fireman, doctor, or politician, lawyer, whatever, but the distinct feeling that I had, and I don’t knew if it had started to develop because of my experiences with hospitals and things like that, is that I had a feeling that what I wanted to do was to have a positive impact on a large number of people. I remember exactly where we were going. I remember the whole thing. I didn’t know in what way because that was sort of, I sort of felt like that was part of what I was going to be doing without knowing specifically what it was. I think through the opportunities I have had with these adventures I have been a part of, that has been, sort of been, what that was all about. It didn’t necessarily show up in what I do for work. It showed up in these other ways. I remember that was what stood out most and what I wanted to be important in my life

Most people naturally don’t like to see suffering of other people or suffering of someone close in their family. If people didn’t have a heart, whatever that means, or a soul whatever that means, is there suffering? Do you know what I am saying? Things happen around us such as a storm, a hurricane, or an earthquake. Those things that happen in nature around us are totally oblivious to what we see as pain and suffering. Suffering and pain comes about because we have nerves in our bodies that sense pain. We have emotions that are complex things because of whatever is inside of us, but I don’t know why there is [suffering].

Partly it could be because there are limited resources, limited land and people want to have what they want for their families or for their countries, and that often means that others suffer because of the consequences and attempting to have the same resources or occupying the same.

In terms of suffering with people who are born with difficulties or disabilities or whatever, I honestly don’t know. It goes back to, the religion thing, again. You may believe it is just part of the scheme of things, that people are suffering because of the mistakes of Adam and Eve, if you feel that or believe that perspective. Or, there is a good God and there is a bad God, and there is a, depending on… if you’re a Christian and you believe what the Bible says, then you’ve got different versions of it, so which do you believe? You know, you’ve got the Old Testament, you’ve got the New Testament, and you’ve got all of these different things, so the idea of suffering, I don’t know.

I think that what society and what the structure of society does, is to attempt to reduce the suffering by providing jobs, by providing housing, and all of the things that make the daily battle less of a battle. I mean, by having a home to live in, you’re not exposed to the elements every night. By having water pumped into your house, you know, that eliminates having to carry it from a well a half a mile away, like a lot of the world does. Depending upon the society that you look at around the world, suffering is less because resources are more.

During the World Ride that I was a part of four years ago (we cycled over 13,000 miles, went to 17 different counties we saw from the very wealthy to incredibly poor people. The interesting thing about, you know, the idea of suffering and society is that the more resources you have available, theoretically, the happier you are and the better off, you are. But this is not always the case. We met people or bumped into people who had very little in material things but had all of their basic needs taken care of and appeared to be very happy or seemed to be very happy. And then we would run into people who supposedly were wealthy and had many things and weren’t happy and were still suffering. They would still suffer because of accidents or health‑related things, so it’s like it comes down to those resources and what’s available and the circumstances and all of those different things.

The experience that has given me the greatest joy has been my wife’s pregnancy. When I think back to the greatest joy, I think, [it] was probably learning that she was pregnant. That was a really good feeling.

This is my first child. We [my wife and I] just met last year. It was like … she knew on the second date that we were going to get married. I didn’t know until like the third date. It was sort of like … we both sort of knew. We really hit it off well, and we decided, not long after we met that we wouldn’t worry about whether we got pregnant or not. We hadn’t gotten married. We hadn’t planned any of that, but it was just like everything felt very, very comfortable. I’m 44, and she is 36, and we figured it would take a while because we have friends who are still trying [to get pregnant], so we figured it would be a year or two, but it happened absolutely instantly, and as soon as we knew it had happened, we thought, “Oh, my gosh!” We haven’t known each other very long and all of a sudden we’re compressing this whole courtship, getting to know each, getting, engaged, and all of that kind of stuff, into a very tiny period of time. It was sort of interesting, but back to the question of my greatest joy ‑‑ is sharing the pregnancy with her. The baby is due June 17, two days before my birthday. Most everyone in her family has always delivered early so we’re thinking it may be earlier.

I am fairly happy with my life and things are going pretty well. I wish financially things were better off, but things are doing pretty well. Overall, I couldn’t be happier. Recently, about a week or two ago, I learned that my Mom doesn’t have time to live, so that is sort of hard but, otherwise, I’m happily married and have a child on the way and have lots of work. And I can get out there and do pretty good physical things, do some cycling….

I’d love it [cycling] to be the thing that I do the day before I die. The muscle thing [disease] that I have varies in how it affects people, but the cycling is just basically a means of transportation. To do it competitively, to do really, really long distance racing, I mean, I don’t know [how long I can do it.

In the World Ride, I’d say, over the eight months of that ride, I personally met and talked to tens of thousands of people. We met ambassadors of countries that had big events. Every country that we went through, I mean it was just an absolutely amazing adventure, and we also met a whole variety of people ‑ cyclists, disabled, athletes, all kinds of people

Speaking about age in cycling we met a group, on our final leg coming across country‑ after we had crossed Europe and Asia and left Los Angeles to come across country for the last part of it In Oklahoma, we got up one morning to have breakfast (often times there were groups that were scheduled to cycle with us for part of the day or whatever), and next to us in this hotel, there was a cycling club that had come from the next state over to cycle with us for the whole day. It was like a 92 mile day. Their average age was 72! Their oldest was 78, and they cycled the whole day.

Hopefully, if physically I am able to do it, I would just like to continue to do it [cycle] because the exercise is really an important part of keeping a healthy perspective on life. For me, it’s important. I feel better if I get exercise. My discomfort is better. All around, it’s healthier, so to be able to do that is important.

[With regard to how people’s attitudes can be changed toward those with disabilities], from when I was younger until now, I’ve seen in this country, I’ve seen a change – a better perspective in general. I think it is, in part due to a couple of different things. Laws were passed in the mid to late 70’s related to education for all children which basically said that all children should have an education, and they should be a part of the school system. I think that helped a lot of young people, at the time, growing up, having disabled kids in their schools. They spend time with them [the kids with disabilities] and see that they are like everyone else, and have the same needs, desires, and wants. Those laws have had an affect.

The more recent Americans with Disabilities Act has had an impact, and just over time, society has acknowledged that a disability doesn’t mean that somebody can’t do something and that they are just a burden on society.

 

Also, in. advertising, there has been more promotion of people with disabilities. They are finding that the more documentation that they do on people with disabilities that this is a sizable part of the population. They [people with disabilities] have gained, directly or indirectly, power just through numbers and through the market. The idea that there is a market out there, and in order to cater to that market, we’ve got to acknowledge people with disabilities. That has helped to change things. It’s been long it’s been slow. For some people, there are still major hurdles to overcome. It’s not true, for everybody, but depending upon the disability, society can still look at some as being a burden or something negative.

While crossing on the World Ride, we went through countries where the attitudes and the experiences toward someone with a disability are the same as it was back in the 50’s and the 60’s [in the U.S]. It’s like 30 or 40 years ago or greater. In some countries, in Russia the term for disabled is “invalid”, or a variation of that so there is the idea of being “in valid”, not being a real person. There are definitely countries where the attitudes are antiquated compared to what we experience here, and conditions [there] are really, really terrible

I met a guy who had lost his legs in a war who rolls himself around on a board with casters on it. He lives on the fourth floor of an old antiquated, concrete‑block apartment building. He gets up to his apartment by hauling himself and his board up the stairs. In other countries, we met others like that fellow. It was not unusual for someone who is disabled to often not have income, who is poorer than the average person, very poor, especially in countries like Russia or other countries in Eastern Europe. So they have many strikes against them besides being in a society that is undergoing great changes.

Accessibility isn’t even in their vocabulary. It is not a part of their vocabulary. We went places where there was no accessibility. We would stay in hotels or places where for anybody in our group who was in a wheelchair, they had to be carried in and out of the building, might even get carried two flights up into a hotel. There were no elevators. They [those with disabilities in those countries] can’t even think about those things, let alone even being a part of the society itself The mind [set] is not even there to think about it, and they [governments] are dealing with the basics for the average person, not at all somebody who has been presented with a disability, So there are some real challenges that they face.

Back to what you were originally asking about, “What can be done [about attitudes]?” I don’t know. I know from my own experience that the more involved you get, the more active you are, and the more you can be involved with groups or organizations that are promoting issues that are important to someone with a disability or disabilities I think, the better off your quality of life is going to be.

It’s hard, especially if it is someone who is newly disabled from an accident. Over the years, I’ve met, at the time, newly disabled people. Today, there are a lot more support groups out there that get involved with somebody not long after an accident has occurred. They are out there; they are meeting with them; they are talking with them; they are making sure that all of their support groups that were there before are still there in addition to any new ones that are needed; they keep them involved in their employment if they can and all of the other activities that they were involved in before especially recreation or sports. They get them back into it but they just do things differently. That can be real important in terms of how they accept the disability and the change, if they still feel like they are a part of the activities that were important before they became disabled. So I think those groups and those organizations are important to be involved with. They can turn someone’s life around.

A quick aside to this is that one time I was on the Board of a group down in New Hampshire called Northeast Passage. They promote sports and recreation for people with disabilities and just having them be involved in society. They have modules and activities every month with all kinds of sports, everything from snow skiing, water skiing, horseback riding, hand cycling, tennis, racing, practically every activity you could think about that everyone else would be involved with.

One day we were having sort of like a Board meeting/party. They had invited some people from the community to come to the party as well. I had recently done the cross country trip. There was a woman there and with her was her brother and her nephew. Her nephew was newly disabled and about 16 or 17 years old, a paraplegic, who was injured skiing. He took that one extra run at the end of the day, and something happened. For him, the whole experience was relatively new. He was there, and he was sort of just going to hang out, but you could tell that he was still dealing with a lot of stuff. He was at an age where it is so damned important to be accepted by his peers and I’m sure he was feeling rather separated and felt like he couldn’t do the things that they were doing.

I had my hand cycle on the roof of my car, and I saw him there. I had met his aunt who has since ended up getting on the Board of the organization. While talking with her, I said, “You know I’ve got my hand cycle there if he would be interested in trying it.” She said, “Oh, sure, that would be great.” So I went over and I talked to him about it, and he was sort of “Yeah, yeah”, but not really interested. I sensed that he was uncomfortable, but I didn’t know why so I didn’t press it.

Then a little bit of time went by, and I went back over, and I said, “I’m going to go over now and take it off my car just try it. I think you’ll like it.” So after a little prodding, we got him out there, and his Dad got out there as well. He [the kid] gets on the hand cycle, and we get him all set up. I tell him how to pedal it, steer it, and how to brake. He goes down the road, goes around the corner and comes back. When he comes back in the other direction, he has this big smile on his face. And then he goes off for about 20 minutes to a half an hour, then he comes back, and he doesn’t want to get off from it.

That experience just showed him that he could still do these things. He just had to do them a little differently. Through this same organization, he got into down‑hill skiing again, cycling, and he realized that this thing happened in his life, but it didn’t have to end his life. It didn’t have to turn him into someone feeling oppressed or depressed by circumstances. It was just a matter of connecting him with the possibilities.

Those kinds of experiences are really neat. I’ve had a chance to be part of that kind of stuff on a lot of occasions where I’ve been able to encourage somebody to try the hand cycle or to try something else or another, and they have just realized that there are opportunities, they just need to take advantage of them. That helps one’s overall attitude.

 

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