college of education | spring 2002

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Chronicling the Life and Vocational Experience of People with Spinal Cord Injuries

It happens in a matter of seconds. Something goes wrong. Your car skids off the road, rolls over, and the next thing you know you’re in the hospital and something is dreadfully wrong.

You can’t feel your legs, and maybe you’ve also lost the use of your hands. The agonizing reality hits you that your life has been irrevocably altered. You have gone from the world of the able-bodied to that of the disabled.

It is a world Nancy Crewe knows well, for she has devoted the better part of 30 years to understanding those aspects that lead to an effective life after a severe injury and to chronicling the lives of people with such disabilities.

“I think it is fair to say that spinal cord injury is devastating, particularly at first,” said Crewe, who is a professor of rehabilitation counseling in the Department of Counseling, Educational Psychology and Special Education. “But what my research has taught me is that spinal cord injuries don’t have to be devastating for a lifetime.

“You can lead a satisfying and productive life.”

In fact, Crewe’s research has been at the forefront in documenting the nature of a productive life with a disability. That research began in the early 1970s when as a young professor at the University of Minnesota Medical School she began working with people who had suffered spinal cord injuries and other kinds of disabilities.

It soon became apparent to Crewe that she could render any number of services in the hospital to help people begin the process of putting their lives back together, but she had little sense about what their lives would be like once they left her care.

“For a rehabilitation counselor, the challenge is to help someone whose life has been severely altered,” said Crewe, who joined the faculty in 1987. “In the early 1970s, we really didn’t know what to expect. And, in some ways, I didn’t know how to help them, either.”

In 1973, she began a study that remains part of her research agenda to this day. It was a study that sought to learn about the lives of those who had been disabled as a result of spinal cord injuries. The original study involved a survey of 256 people who were 18 or older and had been injured for at least two years. The following year Crewe and her team conducted in-depth interviews with about half the participants, some of whom had reported that they were adjusting well and others who said they were doing poorly.

She would do follow ups with a subset of the original group in 1985, 1989 and in 1994. The studies have provided remarkable insight into the nature of life with a disability in the late 20th Century.

 “I wanted to see what they had made of their lives,” she said. “How had they managed their personal relations? Had they been able to maintain marriages? Were they able to find work? Had they been able to do things that were meaningful to them?

“These are issues that are important because when you are working with patients in a hospital setting you want to be able to convey some sense of real hope to them that they can lead fulfilling lives. In order to do that, I had to know that there were some things to be hopeful about.”

For Crewe, the news about life with a disability is generally hopeful given the findings from her studies. The vast majority (86 percent) of those she was able to track down and interview in the last study in 1994 were working, or had worked for a period of years after their injury.

Nancy Crewe

In addition, they had managed an exceptionally stable employment, most of them staying with one employer.

Despite their disability, work had remained an important part of their lives. Nearly half of the participants in the original 1974 study held full-time jobs. In 1994, the number was 56 percent.

Crewe also found a strong work ethic. All of the participants in the 1994 study could have lived on social security benefits, but most of them had rejected that option in favor of employment.

Crewe is quick to point out, however, that many of the participants had endured difficulties and disappointments and other frustrations. In doing the interviews, Crewe said it was clear to her that for some the injury remained a central aspect of their lives. However, many of them had managed to move past their injury, relegating it to a minor aspect of their lives.

In an odd way, Crewe is most struck by the ordinary nature of the lives lived by the people she interviewed. The participants are part of the first generation of Americans, she said, to survive such severe injuries in significant numbers. For Crewe, that they have managed to achieve a measure of ordinariness is a hopeful sign.

“More than anything, I am impressed with their resilience,” Crewe said. “Many, many of them seemed to have a real depth of self-understanding as a result of having gone through all that they’ve been through. They have managed to put things together and make good lives for themselves.”

Crewe is now considering whether to do one last round of interviews, possibly in 2003, which would mark the 30th anniversary of the original study. At that time, she is certain that a number of the participants will be retired, which might make a fitting conclusion to work that has driven her throughout her career.

In the end, Crewe is pleased that knowledge about life with a disability has evolved as much as it has, and is proud of the role she has played in helping document that experience.
She is convinced future generations of people with severe injuries will benefit.

“There has been great progress in terms of the rehabilitation of people with spinal cord injuries,” she said. “And also the American with Disabilities Act was a major step forward. It was real recognition of the fact that a lot of the problems related to disabilities weren’t inherent in the disability but were inherent in the attitudes and the social opportunities that were available to people. Recognizing that and beginning to change that was a giant step forward.

“There are obviously things we can’t put back the way that they were before the injury. That is where the psychological support comes in to help them make a new life, and I think we’ve learned a lot about how to do that effectively in the last 25 years.”

Back to Contents | Faculty Profiles: 1, 2