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Rehabilitation Engineering: The User's Perspective By JOE BRYANT EMB Staff Writer n addition to the technical articles in University of California find adaptive de- ten done by the individuals themselves, this issue, EMB Magazine surveyed vices that allow them to compete in the family or friends, or someone in the area some users of adaptive equipment to de- university setting. Mrs. Bonney and the re- with a reputation as a good all-around me- termine their attitudes toward the techno- habilitation engineers at Stanford Universi- chanic. This was the way the durable Ever- logies they live with and the people respon- ty work together to match available adapt- est & Jennings partnership, probably the sible for that technology. This can not be ive devices with students' specific needs. largest manufacturer of adaptive equip- called an exhaustive survey, but in light of Even now Mrs. Bonney relies on her of- ment in the country, began. Today, many the findings, these interviews deserve fice's developmental engineers, some of wheelchair athletes are designing and more than passing thought. What do the whom have engineering backgrounds but building their own competition chairs. disabled think of their adaptive devices and none of whom have formal rehabilitation Lee Gresham, a quadriplegic from Wix- rehabilitation engineers? training, for her own needs. "I'd just like om, Michigan is another example. Gresham Responses to questions concerning them (engineers) to know that if they're wvas unable to find a van with hand controls adaptive devices varied considerably. going to design equipment for disabled that he could use to drive. So, he devel- Some people found the equipment they de- people, they'd better get with the disabled oped his own. He built a prosperous busi- pend on entirely satisfactory while others individual from the beginning. That way, ness, Gresham Driving Aids, Inc., design- had extensive lists of complaints or sug- they won't come up with these great ideas ing, building, and installing adaptive gestions for improvement. The only pattern that the individual can't use for one reason devices such as lifts, hand controls, tie- readily apparent was a slight positive corre- or another," she says. downs, and other devices. His son now op- lation between degree of dependence and The contact disabled students at UC-Ber- erates the business. dissatisfaction. A paraplegic who alternate- keley have with rehabilitation engineers The reason disabled individuals usually ly walks with the aid of leg braces and through the Disabled Students Program is look to people other than rehabilitation en- crutches and uses a manual wheelchair is uncommon. Most individuals use equip- gineers to solve their needs is generally less likely to be critical than a quadriplegic ment recommended for them by physi- that it proves better to deal with a cheap, who depends entirely on an electric wheel- cians, occupational or physical therapists, reliable person locally than an expensive chair for mobility. A severely palsied indi- orthotists, prosthetists, or friends and ac- professional remote from everyday life. It vidual who relies on a spelling board to quaintances. Although not professionals, takes only a little imagination to believe communicate is more likely to be frus- the last group should not be discounted; that the most effective adaptations are be- trated than a less severely palsied individu- word of mouth seems to be the most effec- ing developed in garages and basements al who requires adapted writing or typing tive means of education once an individual around the country by amateurs. equipment but who can speak clearly leaves a formal rehabilitation program. As It is to these amateurs that disabled indi- enough to be understood. effective as the above groups may be, the viduals seem to turn with their ideas for This is hardly surprising. Responses to lack of contact between users and engi- new, more helpful equipment. This de- questions concerning rehabilitation engi- neers is potentially detrimental to both. Us- prives them of the engineers' expertise; neers did provide some surprises, though. ers are cut off from those most likely to moreover, it deprives engineers of poten- Few of the disabled individuals inter- know the true state of this rapidly changing tially constructive ideas. In addition, this viewed had had any direct contact with a art while engineers are isolated from the di- pattern begs a significant question: Does rehabilitation engineer, could describe the rect, immediate feedback the most con- anyone really know the true state of the art nature of rehabilitation engineering, or structive work requires. for many adaptive devices? The possibility knew how to contact a rehabilitation engi- The isolated nature of rehabilitation en- of senseless duplication of effort in the neer with either a complaint or a specific gineering is enhanced by a nearly total ig- field warrants serious consideration. suggestion or question. norance by users of just what rehabilitation The current situation is unacceptable Sharon Bonney, Director of the Disabled engineers do and how and where they con- from the user's perspective. How, then Students Program at the University of Cali- duct their work. Responses ranged from might it be improved for both the disabled fornia-Berkeley, has regular contact with the cynical reaction that engineers don't and the engineers? rehabilitation engineers, now. This has not care how well a device works as long as The disabled population is highly frag- always been the case. Before starting work they get paid for it, to the belief that this is mented. There are groups that speak with at the university three and one half years a stagnant field where little or no work is some authority for the blind, the deaf, the ago, Mrs. Bonney, who has dermatomyosi- being done, to the conclusion that while spinal cord injured, and some neurological tis, a form of muscular dystrophy, had not engineers have some good ideas, their de- disorders. However, while these groups de- dealt with a rehabilitation engineer to solve velopment reflects profound ignorance or serve attention, they represent significant her mobility problems. She uses both a lack of concern, minorities at best; no group represents the manual and an electric wheelchair and Most individuals interviewed had in majority of individuals with a disorder, still hand controls to drive. Her job brought her some way modified some of their adaptive less for the "disabled community." The re- into contact with rehabilitation engineers equipment or at least had improvements in cent emergence of independent living cen- for the first time. Now, she deals with them mind; some had designed new equipment ters in several states indicates growing regularly to help disabled students at the themselves. These modifications were of- coordination of effort and communication ENGINEERING IN MEDICINE AND BIOLOGY MAGAZINE DECEMBER 1982 39
