Man in Motion World Tour – 15th Anniversary

Q: It’s been 15 years since your tour and clearly your organization, along with the rest of the world, has changed over the last 15 years. Can you speak a little bit about what the new Rick Hansen Man in Motion campaign is about, and how people can get involved with that?

A: The biggest change is that we’re more focused. Our organization has been involved in a variety of very important initiatives over the last 15 years. We’ve disbursed close to $60-million to a variety of programs. As an organization evolves and grows, it has to ask itself where it can bring the most value.

I think that the biggest gap has been in the area of spinal cord research in Canada. It’s been crying out for leadership. We’ve been involved in funding and supporting the science for the last 15 years, and we’ve seen some of our brightest scientists lured away from Canada. We’ve seen some of them move into different fields out of frustration, and some even quitting science altogether. We couldn’t in good conscience allow that to continue. We didn’t see any organization at a national level that was able to be totally focused on accelerating the pace to help find a cure for spinal cord injury. It was vital for us to focus our organization and to have a major impact over the long term in that field.

I think people often think of the word "cure" in two fashions. One is that somehow there will be a magic discovery, a pill or whatever, that people will take, then stand up and walk away. That’s a fallacy. Really it’s about a series of incremental breakthroughs that continue to allow people with spinal cord injuries to improve their physical function and therefore their quality of life. If someone who is a high-lesion quadriplegic has a chance through breakthrough research to be able to breathe independently, it has a profound impact on their life.

Q: How close do you think we actually are to that kind of a cure?

A: I think that we have unbelievable potential in the next 10 years to see breakthroughs that will, first of all, allow people more frequently to walk away with full recovery after an injury, allow more and more people with a spinal cord injury to have improved physical function, whether it’s breathing independently, having better bowel or bladder control, being able to have fulfilled relationships and sexual function, living with less pain and/or being less inhibited by spasticity.

The most important challenge for me personally was to be able to learn how to live with my disability and accept the fact that in spite of it I am a whole person. And so I want to be responsible in my approach. I want to be able to make sure that I’m not doing it so that I can walk again. I am doing it because I want to make a difference. When you’ve received a lot of great support from people, you can’t help but be motivated to try to give something back.

Q: Speaking to the personal motivation that you’ve got for taking this on, the whole area is of some contention between people who are very enthusiastic about finding a cure for spinal cord injury and those who say, "We have our disability, let’s get on with life." Can you speak to that?

A: I think that’s a bit of a fool’s debate. You can make a contribution by helping a person psychologically deal with their pain. You can help a person sociologically by removing barriers that don’t have to be there. And you can help technologically by assisting people with function in areas where they have major deficits in order to create freedom. I believe it’s a continuum, and every element of that continuum is valid.

Q: How are consumers with spinal cord injuries involved?

A: Before we actually decided to focus on spinal cord research, we wanted to validate the priorities of people with spinal cord injuries. We did quite a sophisticated survey. We asked what their priorities were in terms of resource allocation between injury prevention, rehabilitation and cure. The interesting result was that the people who were surveyed placed all three of those areas as an absolute top priority. They couldn’t differentiate between the importance of one versus the other. And this was regardless of point of injury from the time immediately after injury to 20 years after.

We’re going to do another, more in-depth survey, to ask people with spinal cord injuries if they are wanting to establish the priorities of research in terms of making a difference in their lives. The questions will relate to bowel or bladder, or pain or sexual function, or breathing independently, or walking again. It’s going to become very, very evident where the priorities are 3/4 and that will provide the focus to our research.

A final and very important piece of our work is that as we build our ICORD program and the national network of centres of excellence here in Canada, we’re going to continue working globally. It’s going to take a global effort to make a difference in this field. For the first time now we have a clear vision and we have a very well-thought-out plan. We now have to go back to the Canadian public to tell people about it and to ask them for their support. We won’t be able to do it without their help.

Q: It’s going to be really incredible to watch how things progress.

A: One of the key things for us is to establish a grassroots network of champions, people with spinal cord injuries, their family, their friends, people with other related disabilities, and other organizations that are focused on people with spinal cord injuries and their quality of life. We’ve got to get a very powerful and consolidated program going that gives everybody a chance to play a role. So this is kind of a call to action, to build our army. We want people to e-mail us, fax us, write us, call us 3/4 whatever it takes to sign up and say, "Hey, I want to be part of this dream."

Q: Well, we wish you the best in your efforts, Rick.

A: I appreciate that 3/4 I appreciate you taking time, Ray, as always. You’ve been a great partner over the years. Thanks for your interest.