Category: Wheelchair + Tennis = Life

Wheelchair + Tennis = Life #19 The Meaning of Empowerment or What You Would Want for Your Daughter

Image result for harlon matthews

One word kept coming up over and over again in my conversations with people in my tournament tour: empowerment. It seems like that word is used a million times a day, from lofty political speeches to diaper commercials. What does it really mean? Apart from a legal definition, giving someone legal authority to do something, a simple definition might be “to give someone power.” But that’s so wide open that one can say that bigots are empowered to hate and discriminate. We don’t normally use the word in that way–normally. Usually it has something to do with sparking an individual’s agency to achieve something good in his or her life. Okay, that’s better. But how does it work in the world of wheelchair tennis?

My conversation with Harlon Matthews in Augusta helped me understand. At the 2014 U.S. Open, the USTA presented him the “The Human Spirit Award,” in memory of Randy Snow. In April 2015, he received the “Brad Parks Award.” Both awards were bestowed upon Harlon for being an outstanding ambassador of the sport, having helped grow the sport, not just in Atlanta, the state of Georgia, or the southern section of the USTA but nationally as well.

Why does Harlon do this? When he was thirty-four years old, he went to an all-sports wheelchair camp, where he met the great Randy Snow. A longtime wheelchair basketball athlete, Harlon gave tennis a try. Here’s what, in Harlon’s words, “motivated and empowered” him: “Randy came to the net and said something to the effect, ‘I’m sorry that I can’t remember your name. But I saw you bank a fifteen-foot shot in basketball. And now I see you on this court, and let me tell you something, you’re a natural born athlete. If you don’t keep doing this, you’re selling yourself short.’” Harlon didn’t sell himself short. He went on to become a dominant wheelchair tennis athlete.

“It’s all about heart,” he said. He had received something so good that he felt passionate about sharing it with others. For Harlon, it’s been about instilling that good feeling in other tennis players, who then take the feeling with them off the court. I pushed him a bit further and asked him what that “good feeling” is. He said, “You are moving, you’re not just sitting still. You say to yourself, ‘I have the energy to do this. I’m accomplishing something. If I can do it on this stinking tennis court, I can go out and drive and do other stuff.’ Tennis is the catalyst, the tool to do other things. You have a purpose and you begin to ask, ‘What else can I do?’ It’s not just the status quo.”

As I thought about what Harlon said, there were two things that stood out to me. First, I wondered what “I can go out” really means.  Let’s work with this hypothetical drawn from the many people I met. Let’s say that Alma was an able-bodied person who recently became a paraplegic because of a motorcycle accident. Alma’s trauma sends her into dark places. She exists in the shadows of life. We can think of Harlon’s words as “empowering” Alma to move out of the darkness and shadows and into the public spaces of life. “I can go out,” she say.

The private sphere of the family is critical to Alma’s self-esteem, assuming the family is loving and supportive. But the ability to participate in the public sphere is equally critical. It’s in our public spaces that we build upon our identities by engaging with others in thoughtful conversations about life and its meaning. Those spaces range from political rallies to religious or spiritual gatherings. By engaging in the public sphere, by “getting out,” we hope to significantly reduce and eventually eliminate the socially-created stigma and shame of a physical disability. Of course, Alma won’t be able to make that transition if there are physical barriers to our public spaces or bigots are able to discriminate against her with no consequence. In the United States, her transition is made easier by the Americans with Disabilities Act, the landmark legislation enacted in 1990 that provides nondiscrimination  protection in a broad range of areas, including employment, public services, and public accommodations.

The second thing that struck me about Harlon’s words is that empowerment is something that triggers that individual, who now inhabits public spaces, to “do other stuff,” triggers that individual to ask, “What else can I do?” It’s not just what Alma actually does achieve, but how many other opportunities might be available to that person. Let’s say playing wheelchair tennis “empowered” her to use her agency to move forward, get an education, and become an engineer. That’s fantastic. Alma actually achieved something very significant.

But I think Harlon was getting at something more than that. As an academic, I did lots of work with the so-called “capabilities approach” to well-being, a framework pioneered by the economist Amartya Sen and philosopher Martha Nussbaum. Don’t worry. I’m not going to go academic on you. But for Sen, who wrote Development as Freedom (a great book I recommend to you), empowerment is all about how much freedom an individual has to elect from a range of goals. So for Alma we would ask, “How much freedom does she have to pursue and achieve any number of things she might want to do?” Does she have the options to be not only an engineer, but also, say, an orchestra conductor, a doctor, a lawyer (God forbid!), etc.? The more options, the better.

Can wheelchair tennis do that? Expand a person’s “capabilities?” A tennis ball can’t alone expand Alma’s range of options. But it does open her eyes to possibilities that she couldn’t see in the darkness of her trauma. And it’s the type of people you’ve met in this book, and the countless others like them, who help her out of the darkness, in some cases with a simple toss of a tennis ball that she manages to hit over the net. From there it takes a network of support to expand Alma’s options—e.g., family and friends, therapists, private foundations, educational grants and loans and non-discrimination legislation.

If someone says that Harlon, as I’ve interpreted his words, is asking for too much, that we should be happy that people like Alma can find “a” job and not be unemployed, let’s see if that person would change his tune if Alma turned out to be his daughter.

 

 

 

 

 

 

 

 

 

 

 

 

Wheelchair + Tennis = Life #19 On Making Sense of the World

To say you’re going to lose your way of life is to say you’re going to lose what helps you make sense of the world. Think about it. “My way.” The “my” is the individual who uses his or her agency to construct a method, an algorithm of sorts, to make it from morning to night and achieve something. If I do this, this, and that, I’ll achieve what I want. If I (1) get up, (2) take a shower and get dressed, (3) eat breakfast to give me energy for the day, (4) take the bus to school, and (5) go to classes and pay attention, I’ll achieve the goal of learning something.

There’s also the “way” of “my way.” That’s everything else that helps the individual execute the algorithm. You need a home in which to sleep well, someone to produce the food for you and get it to your plate, a public or private mode of transportation, a school and teachers.

So when you say you’re going to lose your way of life, at least looking at it positively (a way of life can be destructive), you stand to lose everything that helps you become a  human being, that helps you conceptualize a life  worth living, that helps you see beauty in life. It’s crazy scary, the kind of scary that sucks the air out of your lungs in an instant, that makes your heart skip a beat or two. You fear. You freeze. Your sense of agency disappears. What are you going to do, especially if you’re a kid?

Especially if you’re a kid like Nick with his severe physical limitations? To really get how scary it is, you have to get “granular,” you have to break down in much more detail each part of the algorithm. I’m a quad like Nick but I don’t come close to having his limitations. Earlier in the book, I described a component of my algorithm, getting dressed. I free fall into a chair. Then comes the underwear (sorry, yeah, TMI). Then the pants. Then my socks, which alone takes up to five minutes. Then strapping on each leg brace. Then putting my footwear over the brace. Then putting my shirt on and using what’s called a “buttoner” to button my shirt. Then standing to pull everything up and finishing that part of the algorithm. This could take up to twenty-five minutes or maybe more. And if I stand up and realize I put on my underwear backwards? Start over. I feel really stupid when that happens.

Now can you imagine how much harder it is for Nick, a guy who can’t touch his feet with his hands? How incredibly granular each part of his algorithm is? In Nick’s case, it was his dad that took every opportunity to push his son towards as much independence as possible, to help Nick construct his “way of life.” One of Nick’s vivid memories, one that he has shared with many people, was when as a kid, about four or five years old, he woke up one summer morning excited that he would get to swim later in the day. He called his dad into the bedroom.

“Are you ready for a swim, Nicholas?”

“Heck, yeah, dad!”

“Alright, then.” His dad tossed Nick’s swim suit at him, walked out of the room, and closed the door.

“What? Dad! . . .Dad!” No answer.

Nick laid there, not knowing what to do. He cried. He screamed. The door remained closed. Nick eventually realized that if he wanted to go swimming, he would have to put on the swim suit himself.  He wrestled and wiggled for what seemed an eternity. He eventually got it on.

“Dad! I got it on!” Nick shouted triumphantly. His dad walked in, extremely proud of his son but intent on not making the situation a big deal.

“Okay, then, let’s go.”

My.

Way.

Of.

Life.

Wheelchairs + Tennis = Life Narratives #18 On Losing Your Way Of Life

Paralympics+Day+7+Wheelchair+Tennis+ysOQyl_2BbJl

My final match of the camp’s tournament was against Nick Taylor, the legendary quadriplegic who plays in a motorized chair. I first heard of Nick when I started playing wheelchair tennis in Cedar Rapids, Iowa two years earlier. During one of our practices, Kevin Nebergall, our coach, asked us if we knew of Nick Taylor. Who? Nick Taylor, one of the most highly-ranked quads in the world who serves the ball with his foot. What? That’s right, Kevin assured us, his foot! And he whacks the ball over the net with a wicked underhand serve. I tried to imagine that…

Adaptation. One of the definitions of that word is the process we go through when we deal with changed circumstances. It’s a dynamic term that suggest forward movement despite a calamitous, life changing event that brings everything to a stop. One day I was jogging along a winding gravel road in Bloomington, Indiana, and a week later, thanks to Guillain-Barré Syndrome, I was completely paralyzed and dying in an intensive care unit.

If and when we’re transferred to a rehab unit, we begin the process of adapting to our changed bodies. If we’re quads, we have to learn how to do basic things with our mostly paralyzed hands. Using a fork to stab a brussel sprout.  Grasping a toothbrush and squeezing toothpaste on it.  Then getting the brush to our teeth rather than up a nostril. Using a “buttoner” to deal with shirt buttons.

After we’ve mastered the “activities of daily living,” we’re discharged and sent back into the world of trees, of clouds and birds above us, of concrete sidewalks teaming with people on their way to work or a baseball game. We go on with life. We adapt. Our reckoning with devastating change retreats to some space in our psyches that protects us, allowing us to move forward. But we never forget what we once had and lost. When we least expect it, maybe when we catch a glimpse of ourselves in a department store window, our psyches takes us back to those moments in time when we happily jogged along a gravel road, when we used a fork, brushed our teeth, and buttoned our shirts effortlessly. We exhale, blink. The moments recede. We push forward. Again. And again.

Is the narrative any different if you’re born with a physical disability? Let’s find out. Let’s get to know Nick.

Finding His Way to Tennis

Nick was born with arthrogryposis, a congenital condition that results in limbs being permanently fixed in a way that restricts movement. In Nick’s case, the restrictions are pretty severe. “I’ve never touched my foot with my hand in my life.” He can close his hands but he can’t open them. His arms barely move. His grip strength is very weak. He has no biceps. Yes, he has some triceps, but they’re not strong enough to lift himself out of his chair. Nick’s dad helps him with just about all of his activities of daily living, such as getting out of bed, brushing his teeth, and taking a shower. It came as no surprise to his parents that Nick needed a motorized wheelchair early on in life, when he was two years old.

Nick’s mom worked for Cessna, and his dad owned a property management company in Wichita. They also trained horses to compete in shows. When he was a kid, Nick was always at the horse barn. His parents joked that as they realized how much care Nick would need—he’s had more than thirty-five surgeries—he became the horse they had to train. Nick “the horse” Taylor. It has a certain ring to it, don’t you think?

Surprisingly, or not, Nick wasn’t into tennis that much when he was a kid. Soccer was his sport, in large part because he was an avid fan of the Wichita Wings, a professional indoor soccer team in town. Although soccer triggered his life-long love of sports, for a number of years he used his wheelchair as a deterrent from playing a sport. People like him don’t play sports, can’t play sports, he thought. It was in elementary school that he finally came to embrace the fact that he would have to use his wheelchair if he wanted to play sports. And it wasn’t long before he realized that he was good with his feet.

Nick’s path to the top echelons of wheelchair tennis began when he was in middle school. The trigger that propelled him forward was the trauma of loss, but not, as in my case, the loss of able-bodied functioning.  Like everyone I’ve talked about in this book, Nick had his day of reckoning, the day when the reality of the physical condition he was born into, a condition that arbitrarily befell him, hit him with such brutal violence that he couldn’t see straight. It was when he lost him mom and sense of family. His mother left Nick and his dad when he was twelve, which left Nick bitter and angry. If that wasn’t bad enough, soon thereafter his father was diagnosed with brain lesions. He would die in six months, the doctors said. What would Nick do without his father? “I was going to lose my way of life.”

Wheelchairs + Tennis = Life Narratives #17 On Blame and Punishment

 

grady

My second match was against Grady Landrum, who along with Nick Taylor organized the camp/tournament.  He welcomed me with a warm smile and a twinkle in his eyes that matched his mischievous wit. The match was in the morning on a shaded court. This wasn’t coincidental. Unlike me, Grady’s body can’t produce something that’s vital on hot days, especially when you’re exerting yourself. Because of his spinal cord break, he can’t sweat. Heat without sweat is deadly. That’s why Grady and many other quads spray themselves a lot with water during a match.

But why is Grady a quad? Before I tell you why, let’s talk about the concept of “blame.” When something bad happens, we want to point the finger of blame at someone or something. When we do that we may or may not go moral. When I became disabled because of Guillain-Barré Syndrome, I could point the finger of blame at GBS. It was to blame for making me a quadriplegic. It’s just a statement about causation. I did nothing morally “wrong.” I didn’t break any social norms. So saying something about my plight that might include the words “you shouldn’t have . . .” would seem, well, inappropriate. And stupid. I like stupid, so scratch inappropriate.

But what if I had been drinking heavily for some time, which lowered my immune system, which, in turn, made me vulnerable to GBS. Then we might start getting moral. Unlike saying GBS is to blame, we might point the finger at me. I’m sort of to blame for my disability. As a moral agent, I can deliberate and make choices. I chose to drink heavily. So when I drank heavily, I did something wrong. I chose to violate a social norm that looks down on heavy drinking. Then you might you might say, probably just to yourself, “That’s terrible what happened to you, but you shouldn’t have been drinking heavily.” What was that? You would never say that, even to yourself? You’re never judgmental? Are you some sort of monk or something? C’mon!

Let’s get back to Grady. Flash back to December 11, 1971 in Atlanta, Georgia. Grady was a 17-year-old senior in high school.  He went out with his buddies that night and had a few beers. Maybe more than a few. It was late when he drove his two-door 1970 Dotson station wagon home with his friend, Jake.  Speed: 100 miles an hour. Do you see it coming? Right. He lost control of the car. Grady’s door flew off and he went flying with it. “Snap” went his neck. Jake walked away from the accident. Grady was rushed to a nearby hospital.

He was unconscious for an entire week in the hospital’s intensive care unit before he came to with tubes stuck in him to drain the internal bleeding. He couldn’t talk. He thought he was tied down to the bed when in fact he was paralyzed.  The first doctor, who probably was a resident on a rotation, told Grady that he had broken his neck, but that he had a 60% chance of walking again. Really?

The next day, another doctor walked in and delivered the bad news, the news that would become the reality in Grady’s life: There was a 99.9% chance that he would never walk again. “Why am I not dead?” Grady asked. In his mind, people who break their necks die in ten minutes or less. But the doctor said that lots of people survive spinal cord injuries. The thing is that nobody can say how much function will return. Hmmm . . . Sounds familiar.

While Grady was in the ICU, a kid was admitted with a broken neck resulting from an intimate encounter between his car and a telephone pole. He told Grady his life was over. No goals or ambitions. Grady said to himself, “Let’s see now. Do something with my life or spend the rest of my life at home doing nothing. Hmmm . . . I think I’ll do something with my life.” And he did.

But, like many of us, he had to hit bottom first, he had to face and deal with the moment we subconsciously suppress until it explodes into our consciousness. The reckoning. It can happen any time. I know this. It took Grady about ten years after the accident, when he was 28-years-old, to reach that moment. It was a couple of days before Christmas in Lincoln, Nebraska—he moved there in 1981. His family wasn’t around. He was driving around town when it hit. He swerved over to the shoulder and slammed on the hand brakes. He screamed, “You know Grady, you’re so stupid! You really screwed up your life! Your life could’ve been totally different if you hadn’t gone out drinking that night! If you hadn’t been so foolish!”

Grady was in a totally moral space when he pulled over. He knew he did something wrong, he broke a social (and legal) norm when he chose to down the beers, when he chose to speed like a maniac.  When Grady met up with his reckoning it said to him, “You have no one else to blame but yourself. Point the finger at yourself.”

But here’s the thing. There was something else lying beneath what he said, a brutal subtext about punishment. When you break a norm, there are consequences. The more morally infused word would be “punishment.” The norm could be the social type. Let’s say you’re a new lawyer at some fancy law firm. You get stupid drunk at a dinner party hosted by one of the firm’s partners. You projectile vomit on the table before passing out and smashing your face into your slice of the gluten-free orange and almond cake with mascarpone. Chances are you won’t be invited again to that partner’s home. Maybe nobody at the firm will do anything social with you. Your job might even be in jeopardy. That’s your punishment.

There are legal norms, too. If you commit a crime and you’re found guilty, you may go to prison. That’s your punishment. If you break a civil law, say you commit a “tort” by failing to stop at a stop sign and cause an accident and you’re found liable, you’ll pay damages to the party that sued you. That’s your punishment.

In all of these situations, there’s the idea that the punishment should be proportional to the norm you’ve broken. Most of us would think it reasonable if the new lawyer became a social pariah at the firm. But taking away her license to practice law would be way out of line. Most people would be outraged if a person got a life sentence for shoplifting. And jaws would drop if you had to pay a million dollars for a simple fender-bender.

But there’s no such thing as proportionality regarding the loss of body function resulting from breaking a norm. The punishment is completely arbitrary. Grady could’ve walked away from the accident along with Jake. He could’ve suffered a couple of broken ribs. Throw in an arm or two. He could’ve lost body function below his waist—a paraplegic. But, no, he was sentenced to life as a quadriplegic. A huge chunk of his body was taken away from him.

Maybe that’s what really hit Grady like a ton of bricks when he broke down on highway shoulder. It was his brutal subtext. Sure, he was screaming that he had only himself to blame. But beneath that he was gripped by a violent rage at the inhumane punishment he received for having a few too many beers. For having a heavy foot on the gas peddle. For being young and foolish.

Maybe you remember Brian McMillan’s narrative, the guy who became a paraplegic after his motorcycle accident. He called it “the roulette wheel of hideous misfortune. The ball lands on your number and you can’t believe it.”  “There’s no second chance,” Brian told me. “You can drop out of school and go back again. You can get divorced and marry again.” There was no second chance for Brian, and no second chance for Grady, either. No way to appeal what was a completely arbitrary and staggeringly harsh sentence.

Grady’s reckoning lasted about ten minutes. Then it was done. The anger went away. He put the car in drive, checked the rearview mirror, and accelerated into the right hand lane. He kept driving . . . Eventually Grady obtained an undergraduate degree in Communications from Eastern New Mexico University plus a graduate degree from Western Seminary in Portland, Oregon, and got married to boot. He’s now the Director of Disability Services at Wichita State University. In the meantime, he fell in love with wheelchair tennis and became a highly ranked quad player. Right on, Grady!

I’m pretty sure it took longer than ten minutes for Grady to cope with the hammer blow of his reckoning. It takes years, if not decades, to come to terms with both the blame and the punishment that results in the massive loss of body function. I think that’s why Grady and all of us at the camp have a passion for the sport. Every time we roll onto the court for a match, every time we toss the ball in the air to serve, every time we push hard to the ball, and every time we hit the ball over the net, we’re telling ourselves that at least in those moments we can tell arbitrariness to fuck off.

Wheelchairs + Tennis = Life Narratives #16 The Lousy Student

Chapter Five

Wichita’s “The Air Capital Classic”

******

The plane touched down in Wichita at about noon on Wednesday, June 17. It was a sunny and really hot day. I didn’t check the forecast for the Air Capital Classic combined camp and tournament. Had I taken the time, I would’ve seen that I was heading into a typical Wichita summer: crippling heat–uppers 90s (like 98-99) and horrible humidity during the whole event. But that wouldn’t have stopped me. When I met Nick Taylor at the Cajun Classic and saw him again in Kansas City, he encouraged me to attend the tournament that he and Grady Landrum had put together for sixteen years in a row—the camp was in its third year. It seemed like the perfect opportunity to take my game to the next level, especially as a quad player. I also looked forward to getting to know more about the tournament’s co-directors. Like the “Wheel It Forward” tournament in Kansas City, I would once again be playing a round robin against three other quads: Nick, Grady, and Taylor Graham.

When I looked up the tournament on the USTA’s website, it was listed as “The Air Capital Classic.” It was a catchy title and it made sense because of the major aircraft industry in Wichita that dates back to the 1920’s—the city is known as the “Air Capital of the World.”  But if I had a hand in choosing a title, I might have suggested “The Wichita Meltdown” because of the insane heat. I suppose, though, that the “I-can’t-think-straight-because-of-this-friggin-heat” connotation wouldn’t draw many participants.

This would be my first camp. Nick and Grady came up with the idea for a camp/tournament combination when the tournament’s attendance got socked during the 2008-2009 financial crisis in the country. As the numbers declined, they thought of a way to bring them back up: a clinic before the tournament. With that set-up, people can put the skills they’ve learned in the camp into practice right away in the tournament.

There were forty-four players at the camp. The athletes came from all parts of the country with a full range of skills, from the most pathetic, me, to pretty advanced players. There was Lauren Haneke-Hopps (A division), a high school student from San Diego whose passion for sports extends to kayaking, rock climbing, snorkeling, and baseball. Paola Adams (B division), a Chilean strategy and operations consultant now living in Oklahoma—she had recently taken up the sport.  The C division included John Watson, a basketball and softball player who had just received his Master’s in Communications from University of Texas, Arlington and now works for Kansas University in Lawrence.

We all gathered on the courts of the Riverside Tennis Center Wednesday evening for the first session of the camp. The five coaches introduced themselves:  Jason Harnett, U.S. Quad and Men’s World Team Cup Coach; Paul Walker, U.S. Women’s World Team Coach; Jeff Clark, Pro Coach to Nick Taylor; Kevin Heim, Lincoln, Nebraska’s Wheelchair Tennis Coach; and, of course, Nick Taylor. A pretty impressive group.

After coach Walker reminded us to be good boys and girls and clean up after ourselves, we split up into groups and worked on forehands, backhands, and serves. My forehand stroke was pretty decent by then. But my backhand needed major work. For most beginning players, the backhand is the most challenging to master. For me, it was especially hard because I was learning the “inverted backhand.” Non-quads can move the positioning of their grip depending on whether they’re hitting a forehand or backhand. But for most quads who tape their hands to the racquet, they have to decide what grip they can use for both forehand and backhand without switching grips. Some use a grip that lets them play a regular forehand and backhand using a “continental” grip. But my wrist is too weak to do that. Given my semi-western grip (try picking up the handle from the floor), my coaches had me learn the inverted backhand. Instead of the palm of your hand facing inward on a backhand, the palm is facing away from you. The coaches had me imagine throwing a tennis ball across the net with my left palm facing away from me. It’s really hard. But I finally began to get the feel of it at the camp.

As the camp progressed the next day, we concentrated more on strategy. We worked on getting back to “the hub” after a stroke. As a refresher, the hub is the area about three feet behind the baseline at the center of the court. I’m a left-hander. So if I roll to my left to hit a forehand, after the hit I should instantly turn into the court and push back at an angle to the hub. If I roll to my right to hit a backhand, after the hit I should instantly turn out and get my butt back into the hub. And as I’m getting back, I’m supposed to look across court to see where the next ball will go. I felt I was going to hurl after doing that drill for about six hits in the searing heat.

As the day wore on, I realized that I was one of the worst players in the camp. I began thinking that the coaches were writing me off. A 58 year-old lost cause. Then it hit me. After almost thirty years, I was a student again. If that wasn’t bad enough, I was at the bottom of the pack. Me, a mediocre student. I didn’t like the feeling.

Actually, I hated it. The other players seemed to be getting the attention than I craved from the “professors.” They seemed to be receiving more compliments than I did.  It didn’t matter that I was misperceiving it all. I felt like running—rolling—to the Dean’s office to complain that my profs were violating every policy known to humankind and ruining my chances of becoming the next number one quad player in the world, thereby robbing me of millions of dollars and my own private island.

Then I came to my senses. The coaches were fine teachers who knew when to intervene to improve us individually and as a group.

Wheelchairs + Tennis = Life Narratives #15 The Reckoning’s Coming

 

If you go to a wheelchair tennis tournament, you’ll see us competing on the courts. When we’re not playing, you’ll likely see us engaged in animated conversations, often breaking out in a cacophony of laughter. But if you dig deep enough, you’ll find the scar tissue of a traumatic moment, a moment when each of us faced the inevitable reckoning with a body seemingly lost to us. You can’t prepare for the reckoning’s coming. When it does come, it hits you with such brutal force that you can hardly breathe. And yet somehow we survive to laugh again. Here’s the next excerpt from my book.

Chapter Five

Wichita’s “The Air Capital Classic”

“It’s unlikely you’ll ever walk again.” What Dr. Silbert said wasn’t registering with me. What?

Unlikely.

You’ll.

Ever.

Walk.

Again.

“Wait. Say that again? I must not have heard you right, doctor,” I said in a whisper.

It was mid-September, 1980, and I was sitting in a wheelchair in my room at Hook Rehabilitation Center in Indianapolis when those gut-wrenching words collided with my ears.

I had survived the summer of torture in Bloomington Hospital’s ICU. I was breathing on my own. Shallow breaths. But still, they were my own. They took the feeding tube out and I ate, with great difficulty, some sort of baby-food-like slop. I could talk, but only a little bit now and then, and only in whispered tones. Trying to coordinate my breath, jaw, tongue and lips to be able to speak was a gargantuan task. I had some movement in my shoulders and upper arms, traces in my forearms and hands. Same for my trunk. And if you stared hard and long enough, you could see my quadriceps flinch occasionally. That was it. There was nothing more they could do for me in Bloomington. It was time for rehabilitation.  To rehabilitate is to restore. To what, though?

******

 

There were two ways to take Dr. Silbert’s words. One was, “Don’t get your hopes up. Rehabilitation doesn’t mean we’ll get you back to where you were before you contracted Guillain-Barré Syndrome.” The other way was, “I’m saying this so that you can prove me wrong.” It was probably a bit of both. In any event, I didn’t have much time to dwell on the possible interpretations. As soon as I was admitted, the Hook staff let me know in no uncertain terms that I was in rehab boot camp. It went something like this: “You’re not in a hospital anymore, so get that out of your head, pronto. No more nursing gowns. You’re going to wear real clothes. You’re going to do as much as you can for yourself as soon as you can. You got that?” “Sir, yes, sir!” “I can’t hear you!” Uhh . . . that’s because I can hardly talk? “What’s that? Huh, you pathetic hospital junky. Now drop down and give my fifty!” Oh, shit.

The morning after I was admitted I was on the mats in the physical therapy room. To arrive at a baseline, the physical therapist carefully measured the weakness in every part of my body. She used some sort of numbered scale, but she could’ve saved time by just writing, “pathetically weak.” From there, I was off to the occupational therapy room, where I would learn once again how to take care of myself, from showering to dressing. After a break, they took me to speech therapy where I would learn to talk again. This would be my weekly regimen for the next five months. Training to be a Navy Seal? Hmmm . . .

******

“Tonight you’re going to feed yourself,” the occupational therapist told me. She helped me sit in the wheelchair, strapped me in so I wouldn’t fall, and wheeled me over to the table in my room. She then brought in a metal contraption that she secured to the right side of my chair. It was designed to allow people with very limited arm strength to feed themselves. She placed my right arm on the contraption’s arm rest, taped a spoon to my hand, and via a number of inter-connected rods I could swivel my hand to my mouth. Pretty cool!

She then placed a round sticky mat on the table and put a plate of food on it: squishy broccoli, some sort of pureed mystery meat, and mashed potatoes. My severely weak swallowing mechanism couldn’t handle anything else. “Have at it, Enrique!” She left the room. It was just me and the food. I was hungry after all the day’s therapy.

Using what little shoulder strength I had, I managed to get the spoon to the plate and scoop up some mashed potatoes. With a few more shoulder movements, I launched the spoon to my mouth and fed myself for the first time in six months. I was deliriously happy. I went for another scoop, this time the meat. Successful! Yes!

Then something happened with the contraption. As hard as I tried, I couldn’t maneuver my hand to the plate. I tried over and over again. No luck. I looked for the call button to get help, but it was sitting beyond my reach on the bed. I looked out at the hallway hoping someone would come in and check on me. No one, not even a passing visitor.

I was alone. There was my food, just inches away from me, and I couldn’t get to it. I couldn’t do something as basic yet vital for a human to live: eat. Just over six months ago, I never would’ve thought twice about being able to put food in my mouth.

It hit me so hard that I could barely breathe. This thing, this fucking syndrome, took my body away from me. I was a shell of what I used to be. All because I had the goddam flu. Who was I kidding? The doctor was right. I would never walk again, let alone run again. My hands, just skin and bones, would no longer be able to do the simplest things in life, like buttoning my shirt. Why? Why me? What did I do wrong? What horrible sin did I commit that warranted such a brutally harsh punishment, condemning me to life as a quadriplegic?

Until that point I was consumed with staying alive in the ICU, and then transitioning to the challenges of rehabilitation. That evening, alone, and unable to feed myself, I had finally confronted the reckoning that had been awaiting me. I wept uncontrollably. Wept for the loss of a life I otherwise would have had as an able-bodied person.

Wheelchairs + Tennis = Life Narratives #14 Interview with Dan James, Former National Head Coach, USTA Wheelchair Tennis

dan jamesInterview with Dan James, Former National Head Coach, USTA Wheelchair Tennis

My book is largely about the life narratives of remarkable athletes. I’ve described the vital network of communities that support and produce them. Coaches, of course, play an important role in grooming our athletes, once the communities have moved a once traumatized person out of the dark places and shadows and into the light of public spaces. Here, via a Q&A, I devote the following pages to the role of the coach, and in particular to the role that Dan James, the former national head coach of USTA wheelchair tennis, has played in developing the sport. I first met him in the 2015 Cajun Classic. He’s a classy guy.

What was your playing career before you started coaching?

I was really lucky to grow up in Northfield, Minnesota, a big tennis town, especially in the 1970’s and 80’s. Northfield is home to St. Olaf’s and Carleton colleges. There were tennis courts all over the place. But it was Jim Holden, my high school tennis coach, who really contributed to the thriving tennis atmosphere in the town. He coached community tennis in the summers and developed an amazing juniors program.

My father, Ron James, played college tennis at Luther College in Iowa, and I started going to the courts with him when I was five years old—I still have my first racquet: a wooden Bancroft!  Tennis is something that I shared with my dad. The sport helped us bond together throughout our lives.

By the time I was ten years old, I started playing in junior USTA tournaments. I got my first rankings in 12-and-under play. In the northern section, I was as ranked as high as No. 5 in singles and No. 1 in doubles.

I was always a big kid for my age. As early as age fourteen, I became a “serve-and-volley” player. That’s how I played my whole career. I was a naturally aggressive athlete. Besides, I didn’t like hitting twenty balls for a point. So I would try to end the point early.

I was recruited to play at Gustavus Adolphus in College in St. Peter, Minnesota. Steve Wilkinson, the coach there, kept his eye on me in my youth play. It was a super opportunity for an eighteen-year-old kid to be a student athlete at a wonderful school. And I mean student athlete, not athlete student. Coach Wilkinson was great in that regard. He wanted you to be not just an athlete but a scholar as well. His focus was on service to others. He, along with my high school coach Jim Holden—who taught me to be a gentleman on the court—ended up being one of my best mentors throughout my career.

How did you get started with wheelchair tennis?

It started with Rolf Jacobson, my good friend and mentor. He was my doubles partner the summer of 1980, when I was ten years old—we had been playing in the doubles leagues for years. He got cancer the following fall and lost both of his legs. I reconnected with him the summer of ’89, just after my freshman year in college, when I volunteered at the “Tennis and Life Camps,” programs that taught life lessons and the importance of stewardship. Rolf taught there and that’s where I first hit with him when he was in a wheelchair. He made wheelchair tennis a comfortable thing for me.

In my early twenties I got tired of playing competitive tennis but I still loved the sport. Wheelchair tennis helped me look at the sport through new eyes, a new challenge to relearn the sport I had been playing my whole life. I began playing with a group of recreational wheelchair tennis players, about eight of them at the time, and they adopted me.  They became my teachers and taught me the sport. They were an incredible influence in my life and I owe so much to them. They helped me see disability as an opportunity rather than a deterrent. I fell in love with the sport. The wick was lit. I needed that at that point in my life.

 Was there a point when you knew coaching wheelchair tennis would be a lifetime passion?

Absolutely. It happened when Randy Snow came to Minnesota to do a clinic in 1993. I went because I was the local wheelchair tennis volunteer coach. I have to say I was star struck. At the time there were two big names in wheelchair tennis, Brad Parks, who started the sport, and Randy Snow, the top player. Randy had the type of personality that just exploded. He was a magnet. Everybody loved Randy Snow. He asked me to do a drill, and I was incredibly intimidated. I was like, “I don’t want to do that in front of Randy Snow. Are you kidding me?” So I think I just ran a basic mobility drill. But I did it with all the energy and enthusiasm of a three-year old kid and he was drawn to that—we created an instant friendship. He based his decision to adopt me more on my energy and enthusiasm than on my skills at the time.  In the world of wheelchair tennis, he became one all my all-time best mentors, teaching me the skills and requirements needed to play at the elite level.  He gave that to me as an incredible gift.

Getting back to the drill, after I ran it, he told me two things. The first was, “You know, Dan, if I could stand up I would kick your ass.” Hah! Second, he said he wanted me to be part of his national camp staff, which was a wheelchair tennis conglomerate of Veterans of America as well as the USTA. They essentially were the sponsors of Randy Snow’s national camps. He put together a staff of twelve people, which included Brad Parks, Nancy Olson, who in 1992 was No. 1 in U.S. women’s wheelchair tennis, as well as Coach Val and his wife Marsha Moore, the first prominent able-bodied coaches of wheelchair tennis. The Moore’s taught me how to be an able-bodied coach in a wheelchair tennis world. At tournaments, Nancy would teach me movement patterns.

I was so lucky to travel around the country with them from 1994 to 1999. I had the top coaches in wheelchair tennis instructing me. They didn’t have to do that. They chose to do it. They became my mentors, and taught me something critical: Wheelchair tennis is not “wheelchair tennis.” It tennis, plain and simple. They gave me the gift of removing “disability” from wheelchair tennis. That didn’t mean that I ignored the realities of disabilities. As a coach, through trial and error I had to figure out what would work for each athlete, given his or her physical impairments. For example, I had to learn the difference between, say, a spinal break at T4 and one at T12. What does it mean to have abs and not have abs. Every person, even if they have the same medical diagnosis, will manifest themselves differently on the court. You have to coach each player to their disability. I remember that I had a T12 and a T4 at a local program. When I started, I was trying to coach them in the exact same way. And it was horrible. They had to teach me. “Hey, as a T4 I can’t do this.” But what does that mean? “Well, as a T4 I don’t have these muscles. So I can’t lean forward. Or I can’t reach up.” Okay, now I understand that and I will coach you to what you can do. That had to be a learned process. It wasn’t inherent.

When did you start your professional career as a wheelchair tennis coach?

From 1996 to 1997, I left the tennis world to get a “real job.” I had to be an “adult,” if you will. I worked at Target’s corporate headquarters in Minneapolis as a merchandising analyst. The company was amazing, but not for me. I became miserable, and I discovered what I was not.

After I left Target, I ran into Jon Rydberg. He was fifteen years old in Minneapolis when I started wheelchair tennis—it was his second day of wheelchair tennis and my first. As a wheelchair tennis competitor, he climbed to as high as No. 11 in the world and became a Paralympian. He told me that the USTA had created a position for a hitting partner (e.g., warming up players before matches) with the World Team Cup—the equivalent of the Davis Cup and Fed Cup, and encouraged me to apply. I said, “No, I shouldn’t. I’ve been out of it for a year. They’re not going to look at me.” But he convinced me to apply. Before I knew it I was a hitting partner with the four teams—men’s, women‘s, and quads (they added juniors in 2000)—at the 1998 World Team Cup in Barcelona.

In 1999, I joined the coaching staff at the Lakeshore Foundation, a non-profit athletic center in Birmingham, Alabama. It’s one of the few places in the world that attracts top athletes with disabilities from around the world. In fact, it became a Paralympic training center. There, I got exposed to the diversity of opportunities for athletes with disabilities.

In fact, the gentleman who recruited me, Scott Douglas, was at one time a top ranked wheelchair tennis player—doubles for the U.S. team. Not only was he a lead player but he was a leader in professionalizing the sport. He created the World Challenge tournament in Birmingham, the first elite-level tournament in the world. It became a beacon for wheelchair tennis as a professional event.

The Lakeshore Foundation was one of the only places where you could coach wheelchair tennis and get a salary. My experience there was amazing. I was exposed to all of the Paralympic sports. It was like I was in “disabled sports grad school.”  I joined the center with the ultimate goal of coaching Team USA in the 2000 Paralympics in Sydney. I reached that goal. It was awesome. At that point, I felt I was home. I was a professional tennis coach. I was overjoyed.

 When did the USTA become involved in wheelchair tennis?

Brad Parks, of course, spearheaded the creation of wheelchair tennis beginning in 1977. In 1998, the USTA took the sport over, hoping that integrating it into the USTA would help it spread. In 2003, the USTA created the position I now have, that of product manager of high performance wheelchair tennis. At the time, Tina Dale from Florida was the chair of the wheelchair tennis committee, whose mandate is to ensure programmatic opportunities throughout the country. She fought tirelessly to create the position along with David Schobel. It wasn’t easy.

I’m a full-time USTA employee, and the wheelchair tennis personnel is comprised of 2 ¼ people working full time. It’s huge, right? But you have to start somewhere! And let me tell you, I am one of the most fortunate guys in the world. I’ve headed camps with high-performance players and as well as World Team Cups. Just as important for me, though, is doing grassroots-level camps around the country, and junior camps.

How does support for U.S. athletes differ from athletes in other parts of the world?

First of all, pro sports in the U.S., including wheelchair tennis, receive no government funding. The USTA, of course, does fund players. But if you look at other countries, Japanese players are funded by corporations. The Dutch players have their own foundations. The U.K. has ten times the budget—via lottery funding—than the U.S. for both the Paralympics and Olympics.

Some Western European players are making six figures. But the American players are struggling to break even. This won’t change unless and until we get more media coverage in the U.S. The media coverage of disabled sports in other countries is exponentially better than it is here. Bottom line: sponsorship dollars are based on media coverage. We’re making progress in the U.S. This year for the first time we’ve had ESPN 3 cover the U.S. Open Wheelchair Competition.

I’m not an expert on media coverage of sports. But I think there’s a cultural difference between the U.S. and other countries. In this country we have tons of cable channels. Producers are very careful about what they choose to cover. If they don’t think they can sell commercial time, they won’t cover the sport. The problem with wheelchair tennis is that it’s still thought of as a “feel-good story” rather than a legitimate sport. We have to turn that around so that the sports story about the athlete comes first, followed by the inspirational back story.

Let me put it another way. Esther Vergeer of the Netherlands was the world’s No. 1 wheelchair tennis player for fourteen years. She went ten years without losing match. She was a great T.V. personality and was regularly on talk shows. And she was treated as a sports star rather than a wheelchair tennis star. In the U.S., we don’t treat our wheelchair tennis athletes as sports stars. In this country, we tend to gravitate to feel good stories. So we don’t treat wheelchair athletes as sports stars but rather as inspirational stars. This is a long-term transition that I would love to see happen. My dream is that ESPN will cover the American wheelchair tennis team. And when we lose, they give us a hard time. “The U.S. wheelchair tennis team really bungled this one.” That’s when we’ll know we’ve made it. It’s about the sport. It’s not, “Hey, they tried. It’s just amazing that they’re in wheelchairs!” Well, no, we lost! That’s where I want the American media to be.

In another appendix, I cover wheelchair tennis in developing countries. But I understand you’ve been involved with that effort. Can you tell us about it?

 The ITF runs the Wheelchair Development Fund. Its purpose is to go into developing countries and introduce the sport, focusing on basic skills. The Fund’s people train the trainers, coaches and therapists. They also work with governments. The ultimate goal is to help people with disabilities to become more productive citizens. The Fund works in a good number of countries, including Kenya, Tanzania, Guatemala, Bolivia, and Ghana.

I went to Tanzania in 2006. It was my first time traveling to a developing country. The shock and awe value of that was overwhelming. I worked with the Minister of Sport. The government’s goal was to get people with disabilities out of their homes and into the public—families were hiding them.

I’ll never forget my experience in Moshi, Tanzania.  I had a group of about thirty people out there trying out playing tennis in wheelchairs. Lots of fun. Great energy. But there was one girl who looked like she was miserable. She looked like she hated me. And throughout the day I tried to engage her to get her to smile. About two-and-half hours into the session I finally did. And she had a blast! She was laughing and joyful. At the end, I was leaving with my interpreter and a woman came running up to me yelling and crying. I was very fearful that I had done something wrong.  My interpreter spoke to the woman and his jaw dropped. He said, “Mr. Dan, that young girl hasn’t smiled in five years. She had barely left her house. And this is the first time in five years that she had been happy.” So for me, what mattered was that wheelchair tennis created a vehicle for that young girl to be happy.

What is the future of high-performance wheelchair tennis in the United States?

Wheelchair tennis has no “hub” like able-bodied tennis at the IMG Academy in Bradenton, Florida. The USTA focuses instead on funding for elite players. I’m not that concerned about the numbers. We have a good group of juniors coming up the ranks. I’m proud that the juniors won the World Team Cup in 2015. The real challenge for high-performance tennis is affordability. To get to the top of the ranks you have to travel the world. It’s not like wheelchair basketball, where you can reach the top without stepping foot outside of the U.S.

I’m confident that the sport will grow both in its professionalism as well as notoriety. But, again, my biggest concern is that while we pursue greater success, we have to be careful not to price athletes out. There may be twenty to thirty players around the world with a lot of notoriety, and they get treated like rock stars. But thousands of others don’t have enough money to practice every week. We have to think long term. Let’s not forget the local programs, the local players who need support. And as we do that, we have to continue our outreach efforts to underserved communities.

What have been some of the most memorable moments for you as a coach? 

The first time that one of our players won the Paralympic gold medal. I watched as the U.S. flag went up and as they played the national anthem. That moment of knowing how hard our athletes have worked, what they’ve done, what they’ve sacrificed. That moment to see them on the court in front of the crowd, to see the flag, to hear the national anthem, yeah, that’s something that will stay with me forever.  It’s a culmination of just being so honored to be representing your country, it’s a culmination of a lot of hard work. An amazing moment.

What has coaching wheelchair tennis done for you?

In so many things in life, there are grey areas. Coaching wheelchair tennis is not one of them for me. I’ve been part of people’s journeys to re-enter life. I’ve seen guys bottom out, and then, through wheelchair tennis, realize that their lives aren’t over. I’ve watched them start that first push forward. Nothing is a greater honor than to be part of that journey.

On a personal side, the most fulfilling part of my work can be summed up in one word: People. My wedding party was filled with people who were part of wheelchair tennis. I’ve met wonderful people from all over the world because of the sport. The wheelchair tennis community has become my family. There is no top dog. We’re a family trying to do the same thing.