Not Disabled but Differently Abled: A Conversation with Vance Bergeron

Transcription

Louis Gouzerh: Today I have the pleasure and honour of receiving Vance Bergeron. Vance is a holder of a PhD in chemical engineering from the University of Berkeley, California. He is currently Research Director at the Laboratory of Physics at the ENS in Lyon. His research focuses on developing solutions to improve the quality of life of paralysed people through daily physical activity. He is also the recipient of a CNRS Medal of Innovation, awarded in 2019, for the outstanding quality of his work. Moreover, he is a holder of more than fifty patents and the founder of the start-up company Circles. Furthermore, he is the founder of the association A.N.T.S., and of an adapted gym for disabled people.

Good morning Vance, thank you very much for joining us today.

Vance Bergeron: It is a great pleasure, thank you for inviting me. I’m looking forward to responding to all of your questions.

Louis Gouzerh: Thank you. Fist of all: how have you been? I know we have been living through difficult times with the pandemic, so, how are you today?

Vance Bergeron: I’m fine. It’s been difficult; I’m always worried because I am a fragile individual now, after my accident, because when you are tetraplegic, you always have to worry about your lungs and your breathing. If I ever do get the Covid, it would be serious. I’m always worried, I’m a bit stressed so I get tested often, and so far, so good.

Louis Gouzerh: Excellent. It’s a good reminder for all of us that we all need to be very careful, and that a lot of people are more vulnerable than they seem. First of all, I’d like to ask you about your work, science in general and your field. Can you tell us more about that?

Vance Bergeron: Yes. It’s a bit complicated because I started out as a chemical engineer and ended up being a physicist, and now I am working in neuro-rehabilitation. I think one thing that’s interesting throughout my career is that I’ve been able to change. I think that’s probably the most interesting thing that I like to communicate, it’s because when you’re in science and you have a basic knowledge, you can do many, many things. And I think often people think that when you do a PhD for example, that you’re stuck with that subject for the rest of your life. And that’s not true: you can actually do many things in your life. I started out working as a chemical engineer at Rhône Poulenc, a chemical company. I was a young scientific researcher. I ended up joining the CNRS, the state laboratories here in France, in 2001. I worked in an area called “soft matter” physics, which is really the physics of every day. I would work with toothpaste, so soft matter is matter that is not really solid, not really liquid, it’s in between. It’s like mud. It has characteristics of a solid and it has characteristics of a liquid. It’s very interesting physics.

I had an accident riding my bike, which I loved to do before and still continue as a handicap. I was run over by a car. Unfortunately, that left me tetraplegic, and I wasn’t able to do the type of work that I was doing before. But I was able to come back to work, and when I did, I changed my subject to neuro-reeducation, sort of to help myself and to help others. I find it – it’s a fascinating field, it’s a field that is new, it’s growing, with artificial intelligence, with the robotics – all these things are very exciting and they are a piece of my life now, and I’m able to play and to help people at the same time.

Louis Gouzerh: Would you say that your accident changed your perspectives on life?

Vance Bergeron: It did. I think the most important perspective was, I was blind to the handicap. I don’t feel guilty of that blindness, because it was part of my life but now I am much more aware of the obstacles that handicapped people, particularly people in wheelchairs, have to go through. That made me a new awareness, I’m more empathetic to the people who are in these situations. And then, at the same time, it doesn’t make me sad. It’s a new challenge and I like to try to motivate people who are in our situation, handicap situation; it’s just a difference that can be overcome through a challenge and through new adventures. It’s a new adventure.

Louis Gouzerh: So it’s a positive thing, would you say?

Vance Bergeron: I view it as a positive thing. I’m a very optimistic individual; I like to look at life as something to be lived, and the handicap is just a constraint. I think we’re all handicapped in some sense, in some way or other, and addressing that is important, and addressing that in a very positive way, for me, is important.

Louis Gouzerh: Through your work, you’re dealing with very topical issues, you mentioned neuro-science. Would you say that your work will have implications or impacts for the future?

Vance Bergeron: I certainly hope so. I mean, that is the objective. And not only for the future, but for the present. I’m very practical, I was born and raised in the United States; I’ve been in France for twenty-five years, but I’m very practical and the work that I’m doing, I do hope it does have very positive affects in the future – but what we did is we opened up a sports room, which allows people who are motor-handicapped to take advantage of the current technology. What I noticed, when I started looking into neuro-reeducation, was the gap between what we are doing in the laboratory, and what is available to people who are in handicap situations. We and our team are trying to bridge that gap. It’s called “transversal research”: I am no longer an expert as I was before, I’m sort of a catalyst. It means that I help make the transition between the laboratory bench to the bedside, to the patient. That’s a very important element of what we’re doing. The sports room has now celebrated its two-year anniversary two days ago. 

Louis Gouzerh: Congratulations!

Vance Bergeron: Thank you.

Louis Gouzerh: Would you say that this room, that this gym is a sort of experimental ground thanks to which you can practice your research?

Vance Bergeron: Absolutely. It serves that purpose too, and that’s what is very convenient and very exciting about it. We’re doing two things at the same time: we’re providing a place for people, the general public who have motor handicap, a place to come, to socialize, which is very important, to improve their health; but at the same time experiment on what works best. We are constantly in a phase of improvement. We have organized it in such a way that we have partners here at the Ecole Normale Supérieure, in the engineering and the sciences, so we can have the best of the best helping us to solve the technical problems. We also have a partnership with a hospital, the Hospices Civils de Lyon, which is the public hospital here in Lyon, and they are there to help us, guide us and make sure we are doing it correctly, that we abide by the ethical standards that are required when you are working with patients.

Louis Gouzerh: Was it a lot of work to convince partners, to find partners – did it take a lot of time?

Vance Bergeron: It’s a very good question and the answer is no. The response has been spectacular. I’m not shy, it’s part of my American personality I think, and so I’ve called all of the experts in the world, and every time I have and explained my situation, they have responded positively. Our effort has become an international effort because of that – all of the scientific people that I’ve talked to, who are the experts in the field, have come, have given talks, have offered their help. The hospital here in Lyon, locally, very enthusiastic, they’re helping us open a new, second sports room, so here in Lyon we’ll have two. And the other things that we’re doing is that we’re expanding this and we’re working with different cities in France right now, maybe internationally in the future, to have sports rooms dispersed throughout the country.

Louis Gouzerh: Would you say that you’re spearheading a movement, that you are the first of a general movement towards inclusivity through daily physical activity, or would you say that there were people before you, predecessors, who did that?

Vance Bergeron: There are definitely predecessors and we are always standing on the shoulders of these people. At the same time, I’m a researcher and it’s my job to spearhead, so that’s what I do, and I’m doing it now in this area. But clearly, there are other people who have done this before us and who are now my collaborators, and it’s really thanks to [them]. [It enabled us] us to accelerate and to go as fast as we have gone. We started only five years ago and we are now up and going so without that help from the people in the past, we wouldn’t be where we are today. And then, yes, I plan to take this to new heights, yes.

Louis Gouzerh: We wish you the best with that. I heard that you’re quite a sportsman yourself. Could you tell us more about your [activities]?

Vance Bergeron: Yeah, I’m very proud of that, I used to ride my bike seven thousand kilometres a year, so I would be considered not a professional but a semi-professional because I would take part in different races and whatnot, but not on a real professional level. However, after the handicap, I was able to continue to compete in bicycling. We developed a system using electrical stimulation that uses electrodes that are just taped to your legs, on the muscles of your legs; they excite the nerves on your legs, which causes the muscles to contract and you can do that in such a way on a tricycle – because I am not stable on a bicycle – but on a tricycle, I can lay down on my tricycle, and I can use the electrical stimulation to stimulate my muscles to contract them and to ride my bike again. So what I was able to do in 2016, was to participate in the very first Cybathlon, which was a sort of Olympics, but with technology. So it’s not like the Paralympics: the individuals who compete are considered as pilots, because they pilot different machines, such as a bicycle or an exoskeleton, which is a robot that you wear, basically, to help you, and they race with their robots. The next one is coming, in November 13^th and 14^th, it will be broadcast on the Internet, so everyone will be able to Google “Cybathlon 2020” and watch this. It’s spectacular, because what you see is the state of the art in cybernetics, and this helps people who are handicapped use machines to improve their daily lives and mobility.

Louis Gouzerh: And your room, your sports room, is state of the art as well. I had the opportunity of seeing all the equipment, and I must say, you’ve done an amazing job at funding it and making people come and making people invest in this room. This room is therapeutic as well: since you mentioned electro-stimulation, could you develop perhaps the therapeutic dimension of sports?

Vance Bergeron: Very good, that’s very important. One of the most therapeutic things that we do is to build muscles, not to make us pretty; it’s muscles to protect us. Sitting in a wheelchair, there are often problems with pressure sores. Now, pressure sores come from the fact that we do not have enough muscle to protect ourselves: that means that the bone will be pushing directly against the skin, and that can create a sore, a pressure sore, that can be deadly. It can be infected and it can kill people. If not deadly, it’s costly to repair, so there are high health costs. But by doing the electro-stimulation on the glutes, which is the buttocks area, you can develop a thick muscle that protects you. So when you’re sitting in your chair, you’re protected from pressure sores.

Other benefits are cardio-vascular. When you are in a wheelchair, you don’t get to move much. When you’re in the sports room, we’ve developed all different types of devices that move, that help increase our cardio-vascular system. Those are the two big therapeutic things that we – there are other smaller advantages, but those are the big two.

Louis Gouzerh: Did you get feedback from people who are using the gym about their self-image or the way they perceive their physical image, their body?

Vance Bergeron: We have. It’s a great question because every year, we sponsor an outdoor activity called the “Lyon Cyber Days”. We expose to the general public what we are doing, the bicycles, like [the ones] I talked about earlier, our electro-stimulation equipment we pull off into the park in September, so that the general public can see that. You can find some of this on the Internet, Google “Lyon Cyber Days” and you can find one “Lyon Cyber Days” Youtube clip that is a reaction from the different people who adhere to our sports room. It’s an interview, it’s in French, but it’s well done. What we find is that the psychological and the social interactions that these people get in this room – it’s extremely important. One of the questions that we had was “Why not just open up a gym in a corner of a basic gymnasium that already exists for non-handicapped people?” The answer is no. The answer is no because there is a communication that takes place in an arena like what we’ve created, an ecosystem [where] people can talk openly, candidly to each other so that they can express things that they would not be able to express in an other environment. Not only do we get positive feedback from the sports activity, we get positive feedback from the social interactions that people have in the room.

Louis Gouzerh: I definitely agree with you, and I think that this room provides a safe space for handicapped people, because if you had put it in the corner of a normal gym, it would not have had the same effect at all. I think that handicapped people need their own space, and it is very important to respect that.

How would you connect or articulate the notions of sports and citizenship, since we’ve mentioned the crucial role of your room for handicapped people – would you say that through sports, people suffering from a handicap can be more visible perhaps, or gain more confidence as citizens, human beings, part of the society?

Vance Bergeron: I think you are absolutely right in all of those aspects. I think sports and citizen – what it plays in our culture is general. Sport has so many aspects of communication, people communicating with each other, but also people allowing themselves to depass their limits. Before I was handicapped, that’s what I got out of sport, and now that I am handicapped, it’s even more important, because our image – when I look in the mirror today, I see a different person, and I wanna be proud of that person. By doing the different sports, I see my body change, as I did before too, it’s positive change and that positive change motivates me. I think there’s that image of oneself that helps with the sports, but also you feel better. You’re just conditioned better, you get up earlier in the morning.

Louis Gouzerh: It’s healthy.

Vance Bergeron: It’s healthy, and you feel it directly. I agree.

Louis Gouzerh: And lastly, I would like to open our conversation to the notions of diversity and inclusivity. You are an acknowledged researcher, you have a status – would you say that your disability is a challenge or an obstacle. How do you feel about that?

Vance Bergeron: That’s very funny; in some ways, I feel that without the accident and the handicap, I wouldn’t be where I was today. It’s actually opened doors to me. I was a successful researcher before – I wouldn’t be in the École Normale Supérieure and the CNRS if I wasn’t – but the handicap has not prevented me from advancing; it’s actually opened new doors. As I said before, I look at things as a challenge, and once I became handicapped, I had a new challenge. I was in a unique situation, because I was a scientist and I was working with professional scientists and professional hospital doctors, and I just saw this challenge and I jumped into it. There was a big need and the handicap has helped me with my learning new things, but also giving me subjects to do my research that I believe have a higher ethical value than I did before. I am more proud of my research, because I know my research is doing something that is going to help people directly today and tomorrow.

Louis Gouzerh: That’s amazing. And it’s positive things that you are telling us today, but I would just like to conclude and ask you what you think about the perception of disability perhaps in higher education and more broadly in France. What do you think are the challenges awaiting us?

Vance Bergeron: I think disability is a big arena. I can only speak to motor handicap because I’m not experienced enough in the different disabilities that people undertake. For example, psychological disabilities, I am not an expert on or anything. However, what I can say is that in the motor handicap area, we have a lot of work to do for accessibility. Two things. One people often realise is the wheelchair and the road. But what I find is that every restaurant that I go to I cannot put my wheelchair under the table. It says it’s handicapped accessible – well yes, that means I can go through the door, I can get in, and there may be a handicapped toilet, but they haven’t thought about the chair, sitting at the table. You can’t get your chair underneath the table. So there are many small things like that [and] people need to continue to challenge society, challenge our everyday activities. And the simple things, like getting up at a table at a restaurant is an example. We can go through lots of those, but that’s the job that we have to do today and it’s one of the reasons we have to be vocal and we have to speak out and communicate. It’s about communication. What I find is that after you communicate, people realise – they just don’t realise. You should not be angry at them, it’s just that they don’t realise. And once you communicate, and this is part of what we’re doing today, which I’m very happy to be able to share with you, we’re able to make change.

Louis Gouzerh: Thank you, and I was glad to be able to make change with you today. Thank you again, it was an absolute pleasure.

Vance Bergeron: Great, thank you very much.