Sex, Karate, and
Excerpted from tapes, newly transcribed by Jon Oda, of Ed’s 1992 conversations with people who were new to disability.
IN PHOTO AT RIGHT THAT'S ED AT CENTER, MIKE BOYD AT LEFT, TONY JOHNSON AT RIGHT.
I used to be a lover. Now I’m becoming a killer and he [speaking of his karate instructor and friend, Tony Johnson], he is a killer who’s becoming a lover—just changing positions. [To Tony, Jon Oda and Mike Boyd:] No. If I’m going to be up here, you guys got to be up here. Come on up.
Tony: Are we safe?
Mike: Now we’re going to see Ed’s karate moves when I attack with a cane.
Ed: Yeah, canes are dangerous. You’ve got to watch canes. So this is Jon. Jon’s my attendant. He travels with me, we travel all over the world together. And, as one of the more remarkable sort of—well, he hurt me today, badly, I want you to know that. [Laughter.] I am lucky I’m here, I’m in tremendous pain, but, boy I’ve got the guts, you know, I’m tough. [Laughter.]
Jon: It wasn’t intentional.
Ed: He was moving a chair and he hit me in the elbow with it. Jon and I travel and live together twenty-four hours a day when we travel and those of you who have intimate friends that you live with know how tough that is. We do a great job together; we somehow work it out when we’ve got problems and we’re able to deal with issues directly, in front.
Mike Boyd is my mentor; he was brain injured twelve years ago when he was in a car and a truck came from behind and smashed him. Oh, and he was injured all over the brain. It affects his body, it affects his mind, and we try to just kind of ignore it but it gets very difficult [laughter].
But he knows more about the effects of brain injury than anybody I ever met, including doctors. It’s one thing to remember, that a lot of us have been through disability and understand it from within and often felt awful about ourselves and began to hopefully rebuild our attitudes and become empowered about who we are and finally love ourselves again are more powerful in talking with people and have more knowledge. So never think that you don’t know what’s going on and always figure that you probably know as much or more than the doctor or any therapist that you’re dealing with. Make sure you assert yourself or you get lost, you’re just another number.
I have stayed at hospitals a couple of years at a time, I’ve been around institutions, I’ve done all the stuff many of you have done; I’ve felt awful about myself, I hated myself; I’ve been to a point where I was told I’d be a vegetable.
I had polio in 1953, before the vaccine, and in one day I went from being a young athlete to being in an iron lung. All the people I met told me I would never be anything, and I was fourteen. And would I have sex? No, forget it. You’ll never be married, you’ll never have sex, you’ll never do anything in your life. I got to thinking about—Tony sent me this great card once. It said, “I want to thank you for telling me it could never be done ‘cause I just went out and did it myself.” I hope that’s what you feel when people tell you something. You know what? Don’t cry; make it happen for yourself.
It’s like—Hey kiddo! [to a child crying in the crowd] My kid is fifteen now. I was told that I would never have any children, and I have a great kid. He taught me a lot. What he taught me was that I was Dad. No matter that I was sitting in a chair, I was still Dad. And once I can do that you know I can live with most anything; if I can be Dad, I can do almost anything, right? There is no tougher job in the world than being a parent. Probably no more important job.
They said I’d be a vegetable and I’m an artichoke. I decided if I was to be called a vegetable I’d choose one I liked. So I am an artichoke: a little prickly on the outside, but with a big heart.
If you can’t laugh at who you are—if you can’t laugh at what you’re labeled and what somebody else thinks about you, you’re in trouble. So hopefully you all laugh a lot about yourselves. We get into the damnedest situations because of our disabilities sometimes.
I can tell you some great stories about sex and disability. All these things I never thought would happen have happened and life just gets better. I’m fifty-four years old and its getting better. I feel stronger and I feel more able, and am doing better and better things.
The reason we call it the World Institute on Disability is because if you think big you do big things. You take as much energy to raise $5,000 as to raise $500,000 sometimes. So think big, think about what you want in your life.
Be sure you dream. I’ve always been a dreamer. I think that really helped me a lot to dream about what someday I might be. I went in to the Department of Rehabilitation which was supposed to be there to help people with disabilities to find jobs and get trained to have a job and within about twelve minutes a counselor, who also had a disability—not like mine; he had a disability in one leg—and he told me, “Why should you even apply? They’re going to reject you. We’re going to reject you.”
Yeah. “You’re obviously too disabled to ever work.” Which is a thing that a lot of people do, who make mistakes and don’t see who you are, don’t see inside you. It’s hard to look inside people and see where they’re coming from and how they feel and what they might be able to do. But we have a lot of strength. And they did all of the standardized testing, which was not made in any way to accommodate a person with a severe disability, and within two weeks I got a rejection notice. And I had a dream that night, the night I got that notice, that someday I’d be director of that department, and I’d kick some ass, let me tell you.
Fourteen years later, I was appointed director of that agency, by Governor Jerry Brown. So dreams do come true, when you make them happen. It’s not just dreaming; its also thinking through how would you make something like that happen. Well, I became more political. Ronald Reagan became governor. He tried to kill us several times. We fought him and we fought successfully. We created a coalition of elderly and disabled people and we gave him the hit. We found lawyers and we found a way to get at him.
The more these things happened the more empowered I became, the more I realized. If one person can make a difference what can a group like you do? A group like this can change this place fundamentally. And you’ll see, as you get into the karate that you change, and you become more empowered. You’ll begin to work the staff here, all of whom are frustrated as well. Nobody who works in an institution is not frustrated. It’s a frustrating situation because there are all of these rules and regulations. They’re always trying to tell you what you can’t do instead of what you can.
The only thing I don’t want you to ever do from this day on is don’t let anybody put you down for who you are. And as you learn that pride, help teach your kids. Teach your kids the same set of values. You know, the most important word in the English language is love. And that’s what this is, this is love here, and learning karate together you’ll learn to love each other. And the most powerful thing you can do, that I did, the way I began to break loose of my own attitudes and all the things that I felt for myself, was to reach out to help somebody else. The most important thing in life is to reach out to other people, not just ourselves. When we think our lives are about who we are and our own problems, but the more we help someone else the more likely it is to empower us and to help move us on. We’ve got a lot to do together.
Clearly I’ve become not a karate kid, more like a karate aficionado. I’ve done a lot of stuff, but when I got into karate, I thought—whoa! All of a sudden I realized I was still an athlete; it’s just that my wheelchair was doing more than my muscles.
Yes, I can be very dangerous, and I know that if I’m out in the community some time and someone thinks that they see an easy victim, they are going to find out something very different as they sit on their ass and I attack them. I’m not going to wait for someone to attack me. And so it gives me confidence to go out more, you know what I mean? To know when I’m out that I’m not a victim, I’m never going to be a victim. And its karate that has given me that initial confidence in myself.
I think every person that’s gone through doing karate with Tony and other people can say they changed fundamentally. And hopefully that’s going to help you; if it doesn’t it’s your fault, not ours. If you’re open to what’s available to you here you’re going to find a lot, including a whole lot of love and caring for each other, which to me is the bottom line; this is a group effort. And then together we can change the hospital, the country, whatever we want to do.
There were three to four hundred blind people there [at an early karate lesson] but they couldn’t see us; they were walking across in the middle of [our lesson.] And it reminded me, hearing the kids here, you hear all these people talking and you hear all this action going on, and it’s a real different training.
Because if you can concentrate on what you need to do while all this noise is going on, I think you’ll be much better at it. I remember specifically the blind people—because they couldn’t see us—they were walking right in front of us, banging into us, across us, we had to keep out of their way and at the same time concentrate on what we were doing with karate. And afterwards, I said, “Tony, I never had a lesson like that.” In the middle of it, all of a sudden I learned to concentrate on the karate and still see them coming so I wouldn’t crash into them and they wouldn’t crash into me.
And I’m thinking, “That’s a great idea!” Concentrate. Concentrate, no matter what’s happening around you. If you can’t concentrate on that attack, you’re dead. You’re not going to survive.
Right now I still make a lot of errors. You know, Tony said something to me once, I thought it was great. He said the difference between a professional and an amateur in anything is that the professional has made so many errors, and they just go on. You know. You make an error, you go on. The amateurs are so worried about making mistakes they get caught up in the errors, which slows them down, distracts them and everything, and I guess I’m learning to be a professional at karate because I’m not worried about making mistakes.
On this one day I went to the dojo, but only to watch [karate], and Tony looks at me and says, “Well?” and I knew I had no choice, I had to get out there, so I went out. And he paired me up with Sully.
So Sully’s a guy, a Hell’s Angel, a guy if you feared any guy it would be him: tattoos, you know, the image of a biker and stuff. So he paired us up and I noticed: Sully had trouble with me. It’s hard, when you’ve been fighting other people who aren’t in a wheelchair, hard to come around; it was difficult for him, and we worked. Just like today, we worked. My arm felt like it was falling off. And I rolled up to Tony at the end and said, “Goddamn, what are you trying to do, kill us?” Then I said, “But I’ll be damned if I was going to quit in front of all these people.”
It wasn’t a minute later that Sully came up to Tony and said, “Goddamn, what are you trying to do, kill us? You worked us so hard!” Then he gets serious and says, “But I’ll be damned, as long as that guy in the wheelchair was still going, if I was going to quit!”
You don’t want to quit. If you have to sit down, if you have to stop for a second that’s what you do. But do your best when you’re doing it.
On the outside we look so different, on the inside we are exactly the same. It tears down the bullshit, whether you have a disability or whatever your difference is, it shows you you’re not going to quit and you are going to do your damnedest. And I think I knew that before, but it was a good lesson for me to keep going.
Never quit. Never quit, no matter what it is. I tell people, “never let anybody put you down.” I don’t care if it’s the damned doctors; they’re good at putting people down. But stop them, tell them it’s not all right. Beware: medical folks won’t like you to do that. Why do we lie there and just take it? Why don’t we ask a doctor, “Why do you prescribe this kind of medication,“ or “What side effects does it have?”
We need to be in control of our own lives; and I don’t care who it is, maybe they have more experience than we have, or more experience than us medically. But we know how our body feels and we don’t want someone making choices for us. And I think more important than anything else, being assertive about what you feel. Be confident that you know what’s going on with yourself more than anybody else does. Your instincts are probably pretty right on. At least ask. Don’t go away feeling like, “Damn, why didn’t I have the guts to do that?” or, “Why can’t I ask that guy, why can’t I confront that doctor! I don’t like him at all.”
The word “no” is a very interesting word. I’ve learned that the word “no” means “yes” sometimes. I do a lot of fund-raising, so I hustle money. I raise maybe half-a-million dollars a year or more, all from different sources. The word “no,” I don’t stop at. That means “maybe” to me. Try again. Try another way; figure it out. And usually after a while, I am successful.
The other thing I figured out is people with disabilities are seen as weaker, and while we often see the sickness, the weakness of disability, disability can make you real strong. I can look back now—it was a bitch at the beginning, it was real hard and I didn’t like the pain and I didn’t like the institutional stuff and I hated the hate I had for myself—over the years as I’ve gotten stronger and felt better about myself. It’s made me very strong.
I look back now and I wouldn’t wish that I didn’t have it. I don’t sit here and think, “God, why me? Why did I have to be chosen to be a crippled guy?” Why not?
If I could handle it, and do well, then anyone can handle it and do it well.
What we can all get out of this is “press” and “resolve.” And one of the words I like to use, one of my favorite words is “persistence.” If you want to succeed, in something, be persistent. Figure out another angle, another angle.
We’re all brothers and sisters, whether we’re brothers and sisters in karate, brothers and sisters in the movement of civil rights and disability. Be proud of who you are, whether you have a disability or different color and different race or religion; whatever it is.
The best thing we’ve got going is our differences, not our similarities. We learn so much from each other because of our differences and yet we are often so afraid of those differences, right? One of the things that happens to many of us with disabilities is we see how our society has been brainwashed to fear us. People literally fear us because of our disabilities and they have terrible misconceptions about who we are.
I mean, why should I be labeled “disabled?” Other people should be labeled, “not disabled yet,” because in their lifetime they’re going to have a disability, I tell you. And more likely as we get older and older together we’re going to have a disability, and what are we going to do, are we going to send those people away? So many people that are older and get a disability, now what do we do? We put ‘em in nursing homes; lock ‘em up. And they die very quickly. That’s what we want. We know we can get personal assistants like Jon who can come into your house and help you stay in your home and you can live a whole lot longer with a lot more quality in your life.
There’s a new world out there and we’re going to help change it. The new word is “inclusion.” We’re going to include people with disabilities. Only 17% of our young people right now go to school with their peers. You think about your own school when you went to school, how many disabled kids were there? I don’t remember any kids with disabilities at my school. Now we have a mandate to change that. When kids grow up together they’ll begin to realize that disability is just a part of life.
Some of us will have it, some of us will be lucky enough to get it a little younger so we get used to it a little bit. People have to be included in every part of our life. And we have to expect high things; like you’re here doing karate, and we expect you to do your best here. I can’t tell you how many times Tony and I will be out and we’ll say, “I study karate with Tony,” and they say, “Yeah, sure. Oh, sure.” And Tony will say, “Yeah, it’s true.” You always have to stop and say, “Yeah, it’s true,” and then all of a sudden we realize, “Jeez, that’s possible.”
It’s important for us to break through our own barriers. One of the most important things we can do in our life is learn how to take risks. What is that next risk? Then take it, and go for it. If you can’t take risks you don’t grow. Karate will help you take risks.
So keep that in mind, and work as hard as you can at it. Things change and they do get better and you’ve got to believe—not that you’re going to get well, I think that’s a whole different ballgame—but that you’re going to improve. See this? I can be paralyzed from the neck down and be up here in control of all of you. It blows people’s minds but not mine any more, I tell you. As you get stronger, you’ll be surprised what you can do. As much or more than anything else, the strength, the toughness is mental. In some ways that’s why I took to karate, I think, ’cause I look for the challenge, I look for it a lot.
All right. It’s wonderful to see you all, I hope you all come back and keep working and work hard, and when you think you worked hard, work harder. All right, see you all.
The pride of Ed Roberts’ life was his son, Lee.
Lee graduated from the University of California at Santa Barbara on June 14 this year. He had two majors there, one in Business Economics and the other in Global Studies. He can be reached by mail at Apartment 7-137, 3905 State Street, Santa Barbara, California 93105.