How to live large in spite of a disability…
By:
Mark & Katie Whyte
email: markwhyte@justadisability.com
Preface: The following is a preview (the first 9 pages) of the first in a 4 part series concerning helping those who are disabled and those who function as their caregivers to live large in spite of any circumstances, problems and obstacles that may surround them. The authors have experienced this issue first hand - Mark is a quadriplegic (but is able to use crutches full time) from a wrestling accident in college and Katie is an RN and speech pathologist who works with handicapped teenagers and young adults. Their oldest son is also high functioning autistic.
This entire series is available on audio.
· The second chapter deals with specific hurdles to overcome in living large
· The third chapter involves the process of getting married and staying married as a disabled person (or marrying someone who is).
· The fourth concerns raising a disabled child and the issue of being a parent when you are disabled.
Part 1 – History, setting and issues to consider
Note: this is a transcription of the audio – and is written informally
Mark: Hi everyone. I want to welcome you to what we call “Living Large in Spite of a Disability.” This is part one of a several segment piece where we’re going to be talking to you about that exact fact, if you have a disability, what does it mean to live large beyond what your disability really has. My name is Mark Whyte and I’m sitting here with my wonderful wife Katie
Katie: Hello
Mark: And we’re going to be talking about several different types of subjects, but this first one we’re going to give you a little bit about our background ,and the injury itself and just kind of catch you up on why we are what we are, and a little bit about how I became the way I am. And that’s pretty darned near perfect as it is. Let me give you a little bit about my background. I just turned 50 years old. I grew up in Wichita, Kansas, doing all of the boys stuff that all boys do. In my case I really particularly grew fond of wrestling in high school. I went on to earning a scholarship at a junior college and had every intention of going from there to a major university and continuing to wrestle, to continue my education.
So that was 1976 and 77. I was at a small school called Labette Community College, which went on to win a national championship in the years ahead, so it was a very excellent wrestling school. I was wrestling after the season, actually, in what’s called a freestyle tournament, and the only reason that’s significant is because that’s Olympic style of wrestling, and the tournaments themselves are not as organized as high school or college. So, it was often kind of hard to know when it is you’re supposed to be wrestling. So, if you need to warm up before your match you’d better stay on top of things, because they may call you at any time, and that’s what kind of happened to me is I didn’t get a chance to warm up at all. If you know anything about sports, you know it’s really important to warm up. I, this is very much of course a layman’s view, but in a sense a muscle does many things, one of the things I think it, I believe it does, is that it absorbs shock. And if you don’t stretch that muscle out and warm it up, if you extend it and put tension on it and so forth, and stress that muscle, it is really unable to absorb the shock, and then since some of that stress and shock goes straight to your bones, you could break something, or stretch a ligament or any number of things in between. That’s kind of what happened to me, I got called to the mat to wrestle, and because of that I didn’t get a chance to warm up, and went out to wrestle.
My opponent came out and took me down, and that’s happened a time or two in my life. Of course I was quite good, and that didn’t happen too often. And he was able to turn me and very quickly put me toward my back. And if you know anything about wrestling, real wrestling, not the “professional” stuff, is that one of the purposes is to gain, to earn points, or to pin someone and complete the match. So when he turned me onto, toward my shoulders, I did exactly and immediately what I was always trained to do, and I had done literally thousands of times, and that was to bridge up onto my neck. But this time, because I did not warm up properly, my neck did not absorb the shock. And when I twisted up on my neck all of that shock and tension went right to the bone, snapped the bone, the vertebrae at cervical six and seven. Pardon me to any of you who are medical people, obviously my terminology is not perfectly accurate. But I think you get the idea, basically I broke my neck.
From that point I was paralyzed essentially from the neck down. The doctors literally drew a line across my chest, and from that point down I had no real feeling of movement at all. And that of course really began a long process of rehabilitation, and they began to see, somewhat early on, that I had the potential to get past some of it, because there’s different kinds of spinal injuries. In my case it was not what they call a “complete” injury, which is essentially the spinal chord is cut in half by the vertebrae as they break. But, they never told me this: they told me it was incomplete, but they never said whether it was partially bruised, or partially cut or whatever.
And in a sense it really kind of doesn’t matter, because I am what I am, and I have what I have, and I have to do the best with what I have to do the best with. And that’s really kind of what we’re talking to you about today, because now, thirty years later after earning two masters degrees, living in Europe and working, in our case, we were Christian missionaries in Europe for a period of time before some other medical difficulties brought us home, and we’ll talk about that in a later segment. You know, there’s been a fair amount of accomplishment.
Now let me begin by saying, and Katie can back me up on this, is that I’m not a Type-A. So, for those of you that think, “Oh this guy. I can’t really relate to him, because Mark is so Type-A, he’s is just so out there., that there’s no way I can duplicate that.” Let me just; let me assure you that I’m not. Katie, would you say I’m a Type-A?
Katie: No, I wouldn’t.
Mark: She’s not a Type-A either.
Katie: No, I’m not!
Mark: So, we, but what we are, is this: we try to be realists with hope. A realist says, we have what we have, I have what I have, I am what I am. I have hopes, I have dreams. Now the reality is, I’m not going to be an astronaut; I’m not going to be a police officer. There was a time, funny enough, a few years ago when my nephew was in the navy, and I thought, “You know, I wonder,” I kind of knew the answer, but I thought to myself, “I wonder if I could ever be a chaplain in the navy. So I called, I live in California now, so I called up to Fresno, to a recruiting station and said, told him a little bit about my background, and he asked me a little bit about my age, and he said, “oh, you’re too old.”
He didn’t say anything, of course, about my injury. He was probably afraid to say something about my injury. But I couldn’t have done it anyway because I was too old. The point is, is that there are always limitations. You know when you’re 20 years old, 25 years old, or even certainly when you’re 15 years old you think you can do anything in the world. And the reality is that you can’t. You don’t want me being an engineer. I will build a bridge, you will drive over it, and it will collapse. Because that’s not where my strengths are, that’s not where my skills are. So you have to be a realist about some things, about what you have. Whether you’re disabled or not, you have certain proclivities and abilities toward certain gifts and skills, or you do not. And then when you become disabled, unfortunately some of the things you might have been good at before, like sports, like running, like climbing, like riding motorcycles or any number of other things. That perhaps you even had a professional ability in, those are gone. So, at the same time the question that we want to talk about in these segments is, “what’s left? And what can we do with what’s left?”
So that’s kind of why we’re here today, and why we’re going to be talking about different subjects, different angles about the whole issue of disabilities.
So, the question that a lot of people ask is, “what does it really mean to be handicapped, and how do you overcome past criticisms, that keep you from conquering your handicap and really living life. So, I guess I’ll test you a little bit on that in the beginning here. Katie, how would you say, having watched me over the years, not being a type-a, being highly over-analytical of myself and others. What are some of the things that you have seen, that I do to, in a sense, to overcome what I have and where I’m at.
Katie: Well, one of the things that I remember from when I first met you, is just that you didn’t treat your handicap as a centerpiece of who you are. I remember that when we were first getting to know each other, that it seemed to be a peripheral issue. You know, occasionally you might ask me, need me to open a heavy door for you, or carry something that you couldn’t carry in one had of the other. But, it just wasn’t something you made a big deal of. And I think as a result I never gave it a second thought in terms f our relationship. It was there but it never was the centerpiece. You just decided to deal with what you have and move on, instead of making it the focus of your life.
Mark: To be completely forthright and direct with you guys, up front about everything. Let me say this, one thing I didn’t mention is Katie’s background. And she is a registered nurse, her father was a pediatrician, and she is also a master’s level speech pathologist. Now, having said that, I think I should also say, “Men always marry up”. It pays to marry up.
Katie: [laughter] now what does that say what I did?
Mark: Ah, yes, that’s the flip side. If I married up, what did Katie do? So, now, having said that as well, everything that we say really has little or nothing to do with whether she’s a nurse (it helps), or whether she’s a speech pathologist, which actually has nothing to do, except that sometimes I am told I have poor grammar. And I am told about that. But, apart from that, whether you are married to someone, or your sister is a nurse, or whatever, it’s not the point. It certainly doesn’t hurt to have some medical people in your background. Well I appreciate what Katie was saying. I keep coming back to the fact that I’m not a Type-A, because I want you to be able to relate to the fact that you don’t have to be a super intense person. One of my heroes in wrestling is a guy by the name of Dan Gable, who in 1972 he won a gold medal in the Munich Olympics. And this guy was so phenomenal that he lost one single match in college, and that was his final match in the national championship, after having won twice earlier. He went on to the Olympics, and not only did he win, but he won on a knee that was completely blown out and taped up, he essentially wrestled on one leg. AND, no one scored a single point against him in the entire Olympic tournament.
Katie: Now see, actually if he had been that kind of person he would have scared me to death.
Mark: I would have scared her to death. And every time I try to be that kind of person I scare myself to death because I can’t maintain the intensity because that is just not me, and I wish sometimes it was. And some of you out there might be going, “well I’m just like Dan Gable,” well that’s cool and I’m glad you are, I’m not. So perhaps I can relate a little bit more to the average guy or girl out there that’s just kind of normal. But, struggling to battle with some things due to their own disability, or married to somebody who is. Now, before we continue to touch on the issue of being handicapped, what’s interesting about Katie’s background and her family, not only did she step in with her eyes open to marrying guy, of course you don’t have any pictures of me per se, but I am incredibly handsome.
Katie: Oh, absolutely.
Mark: So I did have that going for me. But the bigger and wider fact is that after we got married we had a son two years later, and it turns out that in about the next two years, after we moved to Yugoslavia, we found out that he’s autistic. And that, he is now almost 19 years old, has been a long going battle obviously for him, and his parents. Certainly have a great appreciation for my own mother’s stress levels, and worry levels, as much to my own chagrin that I would do either one of those to great extent, but I understand now as a parent why you would worry about the child that you have. When you’ve got one that’s autistic it adds a whole new series of issues, and we’re going to talking more directly about that in another segment.
So it’s interesting that in a sense God doesn’t waste the abilities that you have. Katie’s a nurse, she’s a speech pathologist, and we have an autistic son. I’m handicapped, though good looking and we also have a niece, you know, who’s got Down’s syndrome. We have a niece and a nephew that are struggling with something kind of funky. So, maybe there’s something in the water, but be that as it may, it kind of opens the door to our own understanding. I think we’re able to be, perhaps, a little bit more compassionate and understanding with others as we, because we struggle with some of our own things and some of the background that we have.
So, shortly after my injury, about a year after my injury I was able to complete college. I was obviously about two to three years into college at the time. So, I went and finished. And, um, as Katie mentioned she met me several year, about five or so years later. I finished my bachelor’s degree in psychology thinking I was going to become a psychologist, and decided that was not something that was going to really work to well for me. But during that time I got involved a Christian organization on campus, actually joined the ministry afterwards, did a couple of short trips to Yugoslavia, as it turns out. Work, moved to California, worked with Campus Crusade for Christ. Actually at that time it was “Athletes in Action,” it was a segment I was working with on campus. I worked with, kind of like a chaplain to various sports teams on campus. Then I went to grad school, met Katie at grad school. I saw her up front singing, and thought to myself, “That girl’s really cute.”
And, later that evening, interestingly enough, it was actually our first opportunity to lay eyes on one another. Of course she instantly fell in love, whether she’ll admit it or not.
Katie: Oh, madly in love. Immediately.
Mark: But there was a singles group actually going on that night, and I thought, “Well I’ll go to the singles group, so I can just kind of meet some folks and so forth.” And the door, the entry door to the building was heavy, as some doors are. I was in pretty decent shape but I went to open that door, and thing had kind of a heavy spring on it, and I kind of pushing it, and I believe that somebody kind of came running over to help me. Which we’ll talk about here in a moment. And I remember Katie said, what, she was thinking what…
Katie: I bet that drives him crazy.
Mark: And she was right. It does drive me crazy when people come running over, “let me get that door for you, oh let me help you sir, you poor pathetic piece of meat.” And that’s not always what they’re saying, perhaps not even always thinking that. Unfortunately that’s how it feels, especially to someone like myself. So, there I was, and she had never officially laid eyes on me, and I’m opening the door and she sees me at perhaps my worse, and I’m struggling with the door. Yet, later that evening, she literally threw her phone number at me. You want to tell that story, Katie?
Katie: Well, actually it was the next week that I threw my phone number at you. But yes, I sort of knew that he was only in town for the summer, and I was accustomed to the guys I knew being a little slow on the uptake, so I just, in the course of the conversation, we had been talking for quite some time after this singles group, and looked around and noticed that most everyone else had already left. And, uh, I was living back home with my parents temporarily, at the time. Their phone number was unlisted; he would have had no way to get it. So, and the nursing school that I was going to was literally within walking distance of the graduate school that he was going to. So, you know, I’m thinking, “well, we can get together down there.”
I said, “look, I gotta go, but I’d like to talk to you some more. Let me give you my phone number,” which was the first and last time I’d ever done that. So, it worked out fine.
Mark: And of course she’s never lived that down, because I continue to point out to her that she threw her phone number at me. And again, to know me is to love me. Now, getting back to a little bit about the whole injury thing, I guess that’s what we’re talking about. And you know, it’s interesting. People always misunderstand you. They will try to help you when you don’t want help. They will misdiagnose you, and any number of other things. And that’s one of the things, in a sense; you have to try to get past. I remember when I was just getting ready to go back to college, and I went to vocational rehabilitation [mispronounced] –
Katie: That’s easy for you to say.
Mark: It is easy for me to say. See, there I go, speech therapist. She’s fixing my speech right there on the spot. So I went to this voc-rehab place and they were going to, you know, encourage me and challenge me and set me up with whatever it is that I was going to be setup with so I could go back to college. And I was waxing eloquent about some of my fears, and over-analyzing as I so often do. She says, “Well, Mark you do have to give yourself a little bit of a break, I mean you do have brain damage. “
Well, after I took my crutch out of her mouth, as I had crammed it in there. Actually I didn’t do that, I was much more gracious than that. But I was a little perturbed because it obviously showed that even after all of this discussion that whatever I had sitting in front of her, she didn’t know a whole heck of a lot about a spinal injury, which of course has nothing to do with brain damage. Although, brain damage may have occurred before my spinal injury. But, that’s another point.
Katie: [laughter] But, that’s another story.
Mark: Now, the question also is, is the difference between thinking of yourself as handicapped and living as though you’re not. And that kind of comes back to the whole realism thing where you need to be realistic about what you have. I mean I’m not able bodied. I am, once more, incredibly handsome, but I’m not physically able to do the things that most of you out there listening are able to do. And I need to face up to that. Again I can’t be Astronaut, or a whole bunch of things I can’t be. But there’s a whole lot of those things, frankly, though I couldn’t be an Astronaut I could volunteer at any number of places in the space agency to help out and be part of the system. I could maybe be a kind of a computer guy, or who knows what - If that was in fact important to me, which this was not. But I think that you get the point: that you can plod along and do some of these things in spite of the injury. And that’s what we’re trying to point out here.
Now another, we’ve kind of touched on it already, what do you do when people overreact to you? I would assume that most of you have experienced it as well. There’s this fine line between your willingness to accept help, and your desire to tell everyone that you’re perfectly okay, and that you really don’t need their help, and that they really need to mind their own business and get back into their car and leave you alone.
Well, I try not to ever be rude, and I’m sure I have been more than a time or two, more than I wish. I could not even tell you how many times, even to this very day, some 29 years later after my injury, that I will have people running up – see, here’s the deal: if I’m crutching along and I come to a door and you’re walking next to me whether you know me or not, and we happen to hit the door about the same time, and you say, “Hey, let me get the door for you.” I am more than happy to let you open the door for me. But what I’m not happy about is when you’re ten, fifteen, maybe twenty or even more feet behind me, and you see the poor handicapped in front of you, and because you’re trying to do your good deed for the day – pardon my sarcasm or my cynicism – is that you come running up to try to catch the door for me. Of course, all that does is annoy me. Because, essentially what you’re doing is stripping the dignity off the person that you’re doing that to. You’re saying, “You can’t do it, let me do it for you.”
Unfortunately, that’s the way it comes off. So, don’t get me wrong, I do believe that the vast majority of all of the people that have ever done that to me really meant well. They did not mean to do harm. They did not mean to treat me like “Little Johnny,” who’s incapable. But, unfortunately, it can come off that way. So, there’s a balance, and I think I’m really talking to kind of two audiences here, for those of you out there listening that are able-bodied, I think you need to be careful about that. I think it’s best to say, “Hey Joe!” or “Hey, excuse me, can I get that door for you.”
And the guy says, “ No, I’ve got it fine.”
You just say, “Okay. You know, glad to be of help if I can.”
And you move on. And of course if the handicapped person says they would be glad if you would get that for me, then at that point, of course, you go ahead and get the door or whatever it is, and help them, you know, grab the bag or lift the thing in the trunk or whatever it may be.
That way, of course, and I realize this even as I’m saying it, sounds so simplistic, and yeah the reality is that most people are not doing it very well. They’re not – they keep doing it to me – so I’m guessing a whole lot of people have not heard this message yet. So, since I know that this audio will be going out to tens of millions of people, hopefully, we will then find out that people go, “That Mark Whyte sure gave me a great lesson, and what a handsome fella he is on that audio as well. “
At least I can, however many people may hear the message; at least I can help a few. So, the balance, again, is as handicapped person you’ve got to be gracious, and recognize that these people are really not trying to overdo even though they are overdoing. They’re not trying to harm you.
Katie: Well, and if we could boil that down into a sort of a general principle, for the person – the non-handicapped person – because in my work I work with a lot of handicapped people on a daily basis. It’s just a matter of treating them like they’re a person. Look them in the eye, use their name, and shake hands with them if that’s appropriate. Treat them in every way normally, until and unless you get to the point that you see that you have to modify and accommodate in order to help that person. So, for instance, I know some people that have cerebral palsy to the point where they’re difficult to understand. Obviously, as a speech pathologist I work with people like that. I try very hard to, in trying to understand them, listen, listen, listen, listen, listen. And then if I’m really not understanding what they’re saying, not being embarrassed by having to say, “I’m sorry I didn’t get that, could you say it again.”
So, I’m at a point that I’ve got to modify and accommodate in order to help them succeed in what they’re trying to tell me. But I wait, and I’m patient, and I don’t try to put words in their mouth, until I get to the point, you know, where that become necessary for understanding. The basic principle would be to treat that person exactly as you would anybody else, unless and until accommodations and modifications become obviously necessary.
=================================
THANK YOU for previewing the first 9 pages of our Living Large materials. To instantly download the entire Audio package (including the bonuses):
Use the link from the email in which you received this offer and go to the main order page. If you have any problems, contact us @ markwhyte@justadisability.com