SCI PILOT contains the assistive technology experiences of a diverse group of individuals with spinal cord injury who live in various places throughout North America. They have generously shared their views on their efforts to find the perfect combination of assistive devices to support them as they pursue their ambitions. Their opinions, perceptions, strategies and homemade inventions are presented as a possible help for others going down the same path. Their stories are also intended to provide additional insights to the people who design, fund, recommend, sell and service these devices.

The stories clearly show that the “perfect combination of assistive devices” is a highly personal notion. Taken together, the stories paint a richly diverse picture of people’s life pursuits and occupations following a spinal cord injury. Even considering just the recreational and leisure activities of these people results in a long list that includes: short-story writing, painting, off-road wheeling, woodworking, deer hunting, skydiving, tennis, camping, swimming, arboriculture, target shooting, travelling, hand cycling, ceramics, fishing, power wheelchair soccer, golf and bowling. In their working lives, the participants are: advocates, technical support personnel, bureaucrats, music producers, engineers, homemakers, entrepreneurs, students, teachers, counsellors and recreation therapists. This diversity translates into a correspondingly individual set of demands for assistive technology.

The potential demand for assistive technology is obvious when you consider that everyone participating in this rich set of activities has had a spinal cord injury resulting in some degree of paralysis, including impairment of motor control and sensation in the limbs and trunk, often accompanied by impairments in bowel and bladder control, sexual function and autonomic responses. Several have no movement below their shoulders. Assistive devices offer independence in everyday tasks such as writing a note, using the telephone, opening a door, getting from place to place, and other prerequisites for living a life of one’s own choosing.

This project was motivated by the perception that, while assistive technology may offer clear benefits in theory, the practical realities of acquiring and using assistive devices may limit their usefulness for many.

Each story included here is the result of a face-to-face interview between the person featured and an interviewer from the project team. The interviewer asked open-ended questions about the participant’s experiences and perceptions of assistive technology and collected photographs and video clips of the technology in use. The interviews focused on the wider issues with questions such as, “What advice would you give someone who is looking for assistive technology for the first time?” In the course of these interviews, which usually lasted several hours, participants identified a host of issues relating to both process and products that influenced their success with assistive technology.

Before the onset of a spinal cord injury, people have little reason to know anything about assistive technology. After injury they must become experts. This learning curve is sometimes complicated by an initial reluctance to use assistive devices at all because of a perception that they are symbols of disability. One participant put it this way: “I was so mentally, psychologically, spiritually devastated that I did not identify with any of that … I didn’t care about it at all … I didn’t want to need it.” A related issue is that many equipment purchase decisions are made in the inpatient rehabilitation setting—an environment that is often far removed from the life people will be returning to after discharge. Without the experience of living in the community with their disability, people sometimes feel that they have not yet acquired the knowledge needed to make good decisions. On this subject, one participant said, “If I could do it over again … if it was possible, I would have liked to come home first, see what I need and then order it.”

Whether in rehabilitation or in the community, people seldom make purchase decisions in isolation. Third-party funders often require extensive consultation and the justification of purchases—a process that can be adversarial in nature. In describing the experience of negotiating with his insurance company for an accessible van, one participant who was still in rehabilitation said, “The hope is that they will pay for the modifications needed for me to get my wheelchair into the van…. It’s a work in progress. They haven’t said no, but they haven’t said yes. They just want to make sure that it’s their liability and not someone else’s before they go ahead and start committing funds.” While describing the process of securing funding for wheelchair repairs, another says, “If I need wheelchair repairs, I’ve got to get a doctor’s prescription because the vendors want to have backup in case they’re denied. It’s like asking a teacher to give a recommendation on how to fix a pool.” Consultation, letter writing, appeals and on occasion, litigation are part of the process of securing funds for assistive devices.

The companies that sell the equipment represent another part of the process altogether and demand a different set of skills from consumers. Many participants advocated a “buyer beware” mentality, not unlike what is required for many other vendor-consumer interactions. As one consumer with 23 years of experience put it, “I think the first thing for anyone that’s going to need assistive technology, whatever kind it is, would be to not take the first thing that comes along. Because there are people out there, whether they’re in vocational rehabilitation or on the used car lot, they’ll try to sell you whatever they have at the moment. And so, the first thing is to take your time and look around to see what is available that might meet your individual needs.”

Besides the funders and vendors, other professionals such as doctors, therapists and rehabilitation consultants frequently have a role in helping consumers make product purchase decisions. While it is clear that participants had a wide variety of experiences dealing with these professionals, many felt that they should be considered just one source of information among many. Rather than relying on professional opinions exclusively, many experienced consumers spoke of combining their advice with that of others, especially those with a disability. These consumers often spoke about “doing your homework” and integrating many different types of information, including the advice of service providers, before reaching conclusions. Rehabilitation professionals, “are trained to do evaluations and know what products are out there … I think it’s important to listen to them but make your own decision,” said one person. This proactive approach is in contrast to many of the early rehabilitation experiences, when participants felt more reliant on expert advice, and were often disappointed with the purchases they made based on that advice. One person said, “I don’t think I know anybody post rehab who doesn’t have a big cupboard full of junk that someone thought they would need.”

Perhaps this disappointment with early purchases is not surprising given the diversity of lifestyles noted above. It is even less surprising when one considers that participants seemed to vary from one another in other important ways, including their technological comfort level, personal support situations, concern with aesthetics and overall life priorities. These are all very personal considerations, and consumers described making trade-offs between them. Clearly, there is no one-size-fits-all solution and consumers need to have time and experience living in the community before they can come to their own acceptable balance between these issues to decide what technology they can live with and what they cannot.

However, there were recurring themes in the likes and dislikes expressed by consumers about assistive devices. When devices were perceived as undesirable, they were often labelled with adjectives such as clumsy, cumbersome, difficult to use, big, bulky and even “dorky.” Participants frequently opted for the simplest, most discrete, most portable and least expensive device that permitted them to accomplish a desired task, including no device at all. This is not to say that sophisticated technology was universally condemned as worthless, but when a complex device was valued, the participant often perceived it to be offering some clear benefit not available from a simpler alternative. Homemade inventions made from inexpensive parts from the hardware store were frequently held up as examples of the type of assistive technology that consumers consider important.

Unfortunately, assistive technology must periodically be replaced, which means that consumers must undertake the research, consultation, negotiation, purchase and installation processes repeatedly. Device failure was not the only reason for replacement, however. Sometimes, changes in personal living circumstances—a divorce for example—necessitated re-evaluation of the technology required for independent living. As well, secondary medical conditions such as syringomyelia made it necessary for some to change their set of assistive devices periodically to compensate for ongoing changes in physical function. Finally, changes sometimes occurred in values and priorities. For example, many participants told us that they were initially reluctant to use a power wheelchair because of the perception that a manual wheelchair gives the impression of “less disability” to others. For many participants, this reluctance decreased over time as they considered how much easier it would be to navigate their community in a power wheelchair. Many described this “function vs. image” trade-off shifting toward function over time, at least as it related to the choice of a wheelchair. All of these changes in circumstances and priorities, along with normal wear and tear on the equipment, make it necessary for assistive technology consumers to be repeat customers.

The timing of repair and replacement is not insignificant when one considers the complicated and time-consuming nature of the acquisition process. More than one participant told us that they felt as though they had to make choices between managing their disability, with assistive technology as one key area, and managing the other areas of their lives. One person told us, “That’s the irony of the whole thing. What it boils down to is … I’m going to be leaving work after 29 years because the systems that were designed to make me a taxpayer … they’re causing me to be a tax burden.” The time and effort required to negotiate with “the system” for the devices that help with tasks that people without disabilities take for granted is time taken away from pursuing one’s ambitions. Considering this zero-sum game, it is necessary to ask if technology is really levelling the playing field to the extent that many assistive technology advocates say it is.

The SCI PILOT stories show how complex the prospect of having to rely on assistive technology can be in the real world. Success depends on a huge number of factors, which relate to the user, the service providers involved and the technology itself. These factors also tend to change over time—today’s solution might become tomorrow’s problem. Even the definition of “success” with assistive technology is highly individual. Experienced consumers suggest that, while assistive technology has real potential benefits, the ultimate outcome depends heavily on the flexibility of service providers in meeting their individual needs. New consumers need time and opportunities to discover what their needs are, in their actual living environment, before they make purchase decisions. They also need opportunities to develop an in-depth knowledge of the various products and options available to them. Finally, consumers new and old alike need a service delivery system that can accommodate them as their needs change over time. We hope that this resource helps shed more light on these important issues so that consumers with spinal cord injuries can find and acquire the tools that help them continue to do the things that matter to them.

The SCI PILOT Team
The Toronto Rehabilitation Institute
September 2003