Communication, Sport and Disability

The Case of Power Soccer

Michael S. Jeffress

• Publisher: Routledge
• Year: 2016
• ISBN:
  9781317163534
• Edition: 1
• Topic: Ciencias sociales
• Subtopic: Discapacidades en sociología

Sports are ubiquitous in American society, and given their prominence in the culture, it is easy to understand how most youth in the United States face pressure to participate in organized sports. But what does this mean for the hundreds of thousands of Americans who live with one or more physical disabilities and, in particular, those in powered wheelchairs? Located at the intersection of sports and disability, this book tells the story of power soccer - the first competitive team sport specifically designed for electric wheelchair users. Beginning in France in the 1970s, today, over sixty teams compete within the United States Power Soccer Association (USPSA) and the sport is actively played in over thirty countries. Using ethnographic research conducted while attending practices, games, and social functions of teams from across the nation, Jeffress builds a strong case that electric wheelchair users deserve more opportunity to play sports. They deserve it because they need the same physical and psychosocial benefits from participation as their peers, who have full use of their arms and legs. It challenges the social constructions and barriers that currently stand in the way. Most importantly, this book tells the story of some amazing power soccer athletes. It is a moving, first-hand account of what power soccer means to them and the implications this has for society.

Chapter 1
A Life-Altering Discovery

“Hut! Hut!” my parents call out in quarterback cadence followed by chuckles. They do this every time we bring out the old photo albums or home movies featuring me at about age two running around the house wearing nothing but a diaper and a football helmet. It is no wonder that I cannot recall a time when I did not think of myself as an athlete. I began playing multiple organized team sports in elementary school. School recesses almost always involved a competitive game of touch football, kickball, or basketball. This involvement in sports from an early age shaped my identity. The rest of my life was perennially organized around my membership in various ball teams. Participating in sports always seemed normal to me.

My experience is not atypical. A 2004 study by Jellineck and Durant reports that 90 percent of children between the ages of 5 and 17 participate in some form of organized sports. According to United States government data, over half of both boys (58 percent) and girls (51 percent) played on a sports team in high school in 2003 (US Embassy, n.d.). The National Federation of State High School Associations reported that participation in high school sports increased for the 22nd consecutive year during the 2010–2011 academic year, with 55.5 percent of all students participating on a sports team (Koebler, 2011). When one also takes into account the number of youth who play sports in their leisure time, it is hard to overestimate the role of sports in American society.

To Play or Not to Play?

In their “extensive documentation of families’ everyday routines,” Kremer-Sadlik and Kim (2007) refer to “the pervasiveness and the importance that sports hold as a socializing tool in family daily lives” (p. 49). So pervasive and important are sports in American society that it is safe to say that most youth in America will feel pressure to participate in them. “Not only is there a sense that children’s participation in sports programs is encouraged, but there are also cultural, social and historical messages which signal that children should participate in sports” (p. 36).

Indeed, sports are ubiquitous in American society. Sports season is always open. The airwaves carry continuous broadcasts of sports games, news, and commentary. No newspaper shuns sports. Logos of sports teams are practically omnipresent. Sports insignia surround us, adorning everything from dishes to underwear. License plates, window decals, bumper stickers, and billboards cheer for our favorite players and teams everywhere we go. Professional athletes are paid covetous salaries and treated as celebrities. The books, video games, and other merchandise they inspire are part of a multi-billion dollar industry. Schools and communities are evaluated by the number and quality of their athletic programs and facilities. Fields, gymnasiums, and recreational centers are always buzzing with ball games and a panoply of sporting activities.

This growth and popularity of sports have spawned much research over the past few decades into how sports participation impacts adolescent development and society in general. Some negative associations between sports and youth development have occasionally been noted, and they are related to increased alcohol consumption and other risk-taking behaviors (Eccles et al., 2003; Pike, 2007) and some increased levels of stress, peer pressure, and aggression (Ciairano et al., 2007), especially among boys who embrace a “jock” identity (Miller et al., 2007). These, however, are overshadowed by the preponderance of evidence from thousands of government and academic studies demonstrating that sports involvement benefits physical and psychological health and promotes social wellbeing (American Orthopaedic Society for Sports Medicine, 2012; Hanna, 2012).

Allender, Cowburn, and Foster (2006) reviewed qualitative studies published from 1990 to 2004 on sports and physical activity among both children and adults in the United Kingdom. Their primary focus was on motivations for and barriers to involvement. Their research suggests that the primary motivations for participation are enjoyment and the development and maintenance of social networks. They conclude that the barriers to participation primarily “involve transitions at key stages of the life course and having to reorient individual identities during these times” (p. 834). They claim to have sifted through over 1,200 studies in their research, but noticeably absent is any discussion of the motivations for or barriers to participation for people with physical disabilities.

One study that finds a positive correlation between involvement in team sports and self-esteem among adolescent girls asserts: “Our findings emphasize the importance of maintaining or increasing opportunities for young people to participate in team sports … [and] greater athletic opportunities may be urgently needed among those young people … who perceive themselves as less interested in and less skilled at such activities” (Pedersen and Seidman, 2004, pp. 420–21). Can we assume that persons with physical disabilities are to be included among those “who perceive themselves as less interested in and less skilled at such activities”?

Another study that emphasizes the positive role of sports for youth concludes: “Opportunities for involvement in structured activities should be made available to all adolescents …” (Markstrom et al., 2005, p. 94, emphasis added). I agree, but do the researchers really understand what “all adolescents” means? Does this include adolescents with physical disabilities?

Although athletic competition is often associated with youth and vitality, research demonstrates that older adults receive similar physiological and psychological benefits from participation (Baker et al., 2010). For example, one group of researchers (Dionigi, Baker, and Horton, 2011) performed qualitative research in which they interviewed 44 competitors at the 2009 World Masters Games in Sydney, Australia. The athletes they interviewed had a mean age of 72, and significant themes related to identity and self-efficacy emerged in their narratives. They conclude: “Our data suggest that competitive sport provides unique benefits to participants above and beyond those gained from general physical activity” (p. 24).

Willing but Unable to Play

Given the significant role of sports in the culture and the positive benefits associated with participation for both young and old, it was only natural that when my son Ryan was born in 1993, among other joys this occasion brought to me was the realization that I would be able to share with him my love for sports. I envisioned him growing up throwing, kicking, and hitting balls in the backyard, just as I had done as a boy. Like my father had done for me, I imagined I would hang a tire on a tree so that he could practice his pitching, clear a field if necessary for him to kick his football, and set aside a level spot in the yard for a basketball court. We would punt, pass and kick footballs together. We would play horse on the basketball court for hours. We would play backyard baseball until dark. I would take him to practices and maybe even coach some of his future teams.

Those dreams were dealt a crushing blow in 1999, when Ryan was diagnosed with Duchenne muscular dystrophy (DMD), a degenerative neuromuscular disease that affects all voluntary muscles, as well as the heart and breathing muscles. DMD is often diagnosed around age 5, and those who have it rarely live to their early 30s. It results in a significantly shortened life and necessitates specialized care and medical equipment, including a motorized wheelchair (powerchair). Ryan’s frequent falls and inability to keep up in physical activities with his peers in kindergarten led to the medical investigation that resulted in the diagnosis. By the time he turned eight, this muscle-wasting disease had advanced to the point that Ryan could no longer walk. Adding insult to injury, the generalized muscle weakness that DMD causes also prevented him from propelling himself in a manual wheelchair, so he either had to be pushed in a manual wheelchair or control his own mobility by using a powerchair.

Like his father before him and so many of his peers at school, Ryan grew up eager to participate and compete in athletic games such as basketball, baseball, football, and soccer. Countless times I observed him on the sidelines at school recesses, recreational centers and parks, and on neighborhood lawns, wanting to participate but thwarted by a body that simply would not allow him to achieve what his mind could conceive. Sometimes other kids would try to include him, but it was awkward for everyone, and although it was a nice gesture when made, it usually just added to the disappointment he felt. He did not want sympathy; he wanted to compete.

For several years after his diagnosis, Ryan held out hope that he would be cured and be able to play sports, and so he diligently tried to participate to the extent he was able. I recall at the end of the 2001 school year, his elementary school was having a day set aside for outdoor fun and games. He was in a difficult transition period of the disease at this point; he could still walk and neither he nor his peers comprehended the extent to which his stamina and strength paled compared to other kids his age. For example, on one occasion, he was in a group of peers who were giving each other piggyback rides. Well, of course, he wanted to have a piggyback ride just like all of his friends. So a taller friend squatted down, Ryan reached around his neck, and no sooner did the friend stand up than Ryan fell to the ground and fractured his clavicle. This being the case, I knew that I needed to attend this special day to keep an eye on him from a distance and to help those who did not understand his condition.

My heart ached as I watched Ryan approach the starting line of a relay race only to be left in a cloud of dust and to collapse about halfway around the track. I went out and helped him to his feet and to finish the race. Then I helped him through the maze of games that were impossible for him to play on his own. Through it all, I watched his face, read his body language, and did my best to put a positive spin on things, to encourage him, and to educate others who probably thought I was being a doting, overprotective parent.

At the end of the next school year, the students of Ryan’s elementary school were bused over to the high school football field for a fun-filled day of track-and-field games. At this point in the progression of things, he was using his wheelchair most of the time at school. This fact, coupled with the experiences of the previous year’s event, led me to be hopeful that a few activities might be planned with him in mind. Hindsight tells me that the school expected to give him an excused absence for the day. How could they not know that he was excited to go and planning to participate? With a heart heavy from worrying that the day would end in disappointment, I loaded him up in my truck because the school had not arranged to have a bus with a wheelchair lift to transport him. As I assisted him out of the vehicle and pushed him through the stadium gate and onto the track that encircled the football field, we saw groups of students scattered all around engaged in various games and competitions. It only took a precursory glance for my worst fears to be realized. Ryan’s face became downcast as he surveyed the scene.

I engaged the wheel locks on his chair and went over to talk to the event coordinator and a few other school officials. They could only apologize that they had not given thought to Ryan’s being there and said they did not know how to adapt any of the activities at that point to include him. Choking back tears, I returned to where I had left Ryan parked in his wheelchair and told him: “Hey, Buddy, how about you and I go get some ice cream and maybe go fishing or something?”

In 2003, Ryan became permanently reliant upon a powerchair for any independent mobility. He also began serving as the Muscular Dystrophy Association’s (MDA) goodwill ambassador for East Texas. I surprised him on his birthday that year by working with MDA to sponsor a benefit concert at William R. Johnson Coliseum on the campus of Stephen F. Austin State University in Nacogdoches, Texas, featuring his then favorite rock band. I watched with much anticipation and welled-up emotion as Ryan strolled up onto the stage where a local radio station disc jockey joined him to introduce the band. Before calling the band out for its first number, the DJ turned to Ryan and asked poignantly, “Ryan, if we raise a lot of money tonight that helps to fund the research that leads to the cure, and you are able to be cured, what would that mean to you?” He lowered the microphone down to then ten-year-old Ryan, whose response was unrehearsed and automatic. In the crosshairs of the spotlights with his voice resonating throughout the coliseum, he enthusiastically responded, “It means I’d get to play quarterback for the Dallas Cowboys!”

Later that same year, MDA requested to showcase our family in the annually televised Labor Day weekend Jerry Lewis MDA Telethon.¹ A local television station camera crew from KTRE-TV in Lufkin, Texas, and coordinators from MDA came to our home to shoot some footage of Ryan and interview the family to produce a short video vignette to show during the telethon. I processed a plethora of emotions the night before the videotaping and racked my brain for what I wanted to share with the world in an effort to inform and to inspire financial pledges to fund MDA research and services. My thoughts and feelings that night coalesced into lyrics for a song that I titled “Jerry’s Kids Are Special.”² The following words became part of our MDA video profile, and I share them here because they demonstrate, together with the examples shared above, not merely my authentic connection to the subject, but also how deeply sports involvement matters in American culture:

Verse 1:

Imagine what it’s like to be one of Jerry’s kids today—

One who has to sit in a wheelchair and watch the other kids run and play,

One who can hardly swing a bat, throw a pitch, or kick a ball,

One who has to just sit and watch, while the other kids walk so tall.

Chorus 1:

Jerry’s Kids are special people in this world.

Inside their hearts and minds they’re just like all the other boys and girls.

It’s not their fault that they have bodies weak and lame.

Inside they’re just like you and me, and their dreams are just the same.

Verse 2:

Now imagine what it would be like to be a Jerry’s Kid who’s been cured.

Just imagine what that child would feel; oh, it’d be wonderful I’m sure.

Imagine what a special thrill to just walk and play and dance.

Now imagine that you called right now and your pledge gave him that chance.

Chorus 2:

Jerry’s kids are special; for them we’ve got to find that cure.

Oh their bodies, yeah, they’re different, but their smiles are sweet and pure.

Jerry’s Kids are special, very special kids for sure;

So please open your heart, pick up the phone, and help us find that cure.

Open your heart, call us right now, we need your help to find a cure.

I wrote these words at a time before I knew about the sport of power soccer and before I had any notion of studying anything about my son’s condition from an academic standpoint. At the time my emotions were awakened by the thought of a child longing to play a sport but unable to participate and by the thought of being deprived of the opportunities to play ball with my son and go to his practices and games. Perhaps on some unconscious level my response was because of a desire to fit in, to have more in common with my peers, to be “normal.” It is, after all, “normal” for kids to play sports and for families and neighbors to gather around ball fields, hardwood courts, swimming pools, and tracks to participate with their children in sporting activities.

Sports permeate almost every aspect of American life. So it never surprised me when I would meet someone who did not know anything about Ryan but only knew that I had a son and he or she would ask me if my son was on this or that ball team. It was a reasonable assumption: I was an athletic guy, so my son would obviously play sports. As the distinguished communication and humanities professor and author Julia Wood (2010) explains: “Every society and social group has a generalized other, which reflects the shared values, experiences, and understandings of the particular society or social group” (p. 49), and the society and social groups that I have experienced clearly view sports participation for youth as “normal.”

Pervasive Pressure and Nagging Questions

What I have shared thus far provides a glimpse into the authentic life context that informs my perspective and the impetus and motivation for my writing. Since 1999, I have been processing my feelings and wrestling with identity issues as a parent of a child with a physical disability. For almost 20 years I have watched Ryan grow up with this disease, and I have witnessed the hurt and anguish he feels on the sidelines with the stigma of “the generalized other” associated with his disability (Spillers, 1982; Sorrentino et al., 2005).

I am painfully aware of how much Ryan loves sports and has been hurt by the barriers to participation he has faced throughout his life. I have often worried about how he copes as he daily navigates through social environments at school and in the community where he is usually the only person in a powerchair. How does his self-concept develop when so much of what his friends experience is unattainable for him because of his physical limitations? He watches sports on television and insatiably consumes information about sports in print and online media. His sports IQ is unquestionably higher than mine. He can engage discussions, for example, on key NFL matchups any given Sunday, the teams in the World Cup, or any other major sports headline. He proficiently spouts off the latest stats and records of teams and players, but what does he do when the conversations surrounding him inevitably turn toward the ball teams, practices, and games of those in the conversation? I have worried over how all of this affects his social networks and his self-efficacy beliefs. Thoughts of how it might be different if he were able-bodied and able to realize his dream of playing sports have tormented me.

I realize that some people with physical disabilities embrace their conditions and refuse to be defined by them. Yes, a minority of studies suggests that, at least in some cases, disability may not adversely affect self-concept because individuals learn to focus on what they can do instead of dwelling on what they cannot and find group support among those who share their disability (Crocker and Major, 1989). Notwithstanding, these individuals with physical disabilities must still cope with peer pressure and the ...

Table of contents

• Cover Page
• Title Page
• Copyright Page
• Contents
• List of Figures
• Preface
• Acknowledgments
• List of Abbreviations
• 1 A Life-Altering Discovery
• 2 Snapshots of Changed Lives
• 3 From the Sidelines to Center Court
• 4 Power Soccer and Physical Health
• 5 Power Soccer and Psychosocial Health
• 6 Power Soccer and Relating to People
• 7 Power Soccer and Self-Efficacy Beliefs
• 8 Generating Social Capital within Power Soccer
• 9 Utilizing Social Capital to Promote the Cause
• 10 What Power Soccer Athletes Want You to Know
• Appendix A: USPSA 2014 Team Members by State
• Appendix B: 2006 Indiana House of Representatives Concurrent Resolution No. 0042 (“Concurrent Resolution,” 2006)
• Appendix C: Reflections on My Research and How It Was Conducted
• References
• Index