How do you deal with patients with a spinal cord injury who don’t want to use a wheelchair?

That ties often to a fear of being in a wheelchair long-term. And that’s an understandable concern; it’s a major life change for the individual and in conceptualizing themselves in that way can be very scary. I think it’s important to sit and listen what is it that the individual is fearful for, what are they concerned will happen and again trying to tie it back to what do you need to do for now. Whatever we’re working on now doesn’t mean forever, we don’t know what forever is, I don’t even know what tomorrow is, but we can deal with what we need to work on now.

For some people, they’ve tried to put themselves into one box or another. Either, “I have hope that I’m going to walk again and so I don’t need the wheelchair,” or, “I given up on any hope of walking again and I’ll fully embrace the wheelchair.” I talk to people about, “We’re complicated beings and that more than one thing can be true. I can choose to temporally use this chair while I need it to get around.” And it doesn’t say anything about, “I hope someday not to need it”.

We talk about kind of like, “What is it that you don’t want?” And invariably what you don’t want is, “I don’t want to be injured because that means I’m injured, that means my life has changed, that means that I have these losses. And I don’t want that, because if I don’t have that, then I cannot deal with that.” So that goes back to readiness. And sitting with a person and talking is that emotional bond, and all of the therapists and the interdisciplinary team does that in their own ways. So I’m always cognizant that different people have an access point, and then at team meetings you listen to see that readiness and who’s in that doorway. Sometimes it’s the therapist that comes in and says, “You don’t want the chair? Let’s bring you down to the gym.” And then sometimes they’ll say, “Can you sit in the chair while I’m transferring you.” So you’re in the chair, and then you watch other people and you see what they do with the chair.

We certainly understand that for some individuals that their main idea about going through rehab is to be able to walk. But we try to let them know that this wheelchair doesn’t necessarily have to be permanent, it’s a way to get them closer and closer to being more independent. Letting them know that indeed that this isn’t necessarily permanent but it’s a means to an end. That at least gets them out of the bed into the wheelchair, and then they find out when they’re in a wheelchair that they’re able to do more and enjoy life a lot better. It makes it a little easier for the patient to accept the wheelchair as a temporary strategy to get closer and closer to being independent.

I think that it’s very important to understand the resistance and unwillingness, and really what that means to the person. Does it mean that they’re giving up on recovery? I’ve had many patients who’ve said that. There are other people who feel that their skill, they are motor-challenged and don’t want to do a physical activity like that. But again to understand the nature of why and how-come and what we can together do to transcend that resistance is the most important thing. One size doesn’t fit all, people are different.

I think that adaptive equipment might be a very visual or tangible reminder of what has happened, or they could be concerned about society’s perceptions about disability. So without making those assumptions necessarily, I think it’s important to again have an open conversation with the patient about what does that wheelchair mean for you -- and work from that angle to see how that’s impacting their rehab process. If it’s a concern about safety, maybe working with a patient about understanding that if we don’t use the appropriate adaptive equipment, we might actually move backwards in rehab if there’s an injury. So figuring out what that goal is, and looking at maybe shorter steps. And if there is adaptive equipment to be used, how do you use them at those time points and looking at it in smaller segments.