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This episode is our extended interview with Dr. Gregor Wolbing of the movie “Fixed”.
Dr. Gregor Wolbring, Associate Professor of Community Rehabilitation and Disability Studies, Dept. of Community Health Sciences, Faculty of Medicine, University of Calgary
www.fixedthemovie.com | http://buff.ly/SjRFrw | www.resna.org/conference |
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EXTENDED INTERVIEW
WADE WINGLER: And welcome to the extended episode of Dr. Gregor Wolbring’s interview. We haven’t normally done this in the past, but the remainder of our interview that happened after the original interview is happening now. So we’re glad you stuck with us and we hope you’ll enjoy the rest of this conversation.
Excellent interview. I could do that all day. So here’s my question: if we have a transporter in the future and somebody needs — let’s pick an easy one — a liver transplant, why don’t you transport them and reassemble them with that replacement organ, right? You could cure disease if you can transport people and reconstruct them in the molecular level. That plus dilithium.
[Laughter]GREGOR WOLBRING: That might be hard to get by. I think in general, we see there’s so much to it. For example, look at organs. People designing organs with 3-D printing. They print the organ from stem cells and then you put it into the body. We just don’t have enough organ donors. We have some where the pure, nonbiological part works, like for the heart. Nearly everybody is working on an artificial version. Some will be eventually small enough that they get into the body, like was the heart. With the kidney, they’re not there yet, that’s why we had dialysis. Once you have them, there’s no reason why you can’t add things to it.
Like with the skin, you can put stem cells and there so you can see things you would normally see. Same with the eyes. Eventually you can just put something in there where if you really wanted vision, why would you just go with 20/20? Of course you would go beyond. The same with hearing. Cochlear implants are a really basic set up so far. Eventually they will outperform the normal hearing. If it’s not invasive, then I can easily say that anyone would go for that. If it’s invasive, I think people will still draw the line. But for many of them, if it’s not invasive, or if you use something like Google Glass even if you’re blind because of something put in which beams to the back of the retina and you don’t need operation, who knows what we will do? People will go because all of a sudden you can see infrared and ultraviolet come all kinds of different things.
WADE WINGLER: And if it’s invasive, that’s also objective too. What’s your risk and reward? If you’re blind, than risk tolerance is going to be much higher for more invasive things as opposed to someone who’s “able-bodied.” That’s interesting as well.
GREGOR WOLBRING: But it think if it’s invasive and it’s only for blind people, you will see a limited approach of innovation. But you want to market where you don’t even have to go through the healthcare system. A noninvasive one, you can get away with much less regulation. That’s why they are going for the noninvasive interfaces. Because then they can use it for gaming and so on which is a big market. If you’re quadriplegic then you can also short control.
With invasive ones, there will always be a limited market. All the time, FDA controlled. If you can come up with something we don’t need the FDA. If they are really going for the noninvasive ones, they’re going for big markets, then the question is whether to bother then with a smaller market in case there are limitations with how much you can do with invasive versions. It’s the same with the eyes. If you have something where the whole market is flooded with people using Google class and this in fact, how many people will still focus on getting real vision back? They will see the normal people who will be the consumers who really push for these enhancements and they will compete for resources, even resources of students who want to do the research.
I wrote a piece a long time ago where I looked at medical students, and they all want to go for the cool stuff. They don’t want to go for basic medical treatment. They want to do robotic arms because that’s cool stuff. That’s Star Trek. So we will see that basic medical treatment might be becoming unfashionable and no one wants to do it, because they all want to do the cool techno stuff. So we, in essence, are competing with these cool people and the enhancements, and the normal people really have the education level to push for these things.
It’s similar to the AIDS movement. When the AIDS movement came along which are highly educated people, they were able to totally change the research agenda because they have a powerful education level and they used euthanasia to push with they were painting. They couldn’t have cared less about disabled people, the traditional disabled people, and there was no way we could compete with the AIDS community. We just don’t have the amount of people who have a level of independence, as in self-determination, not enjoying yourself, and also level of income, level of education, that they really can do in advocacy and really compete with the people who are in the AIDS movement. So we already have an example where a group came with a totally different agenda and much more powerful, and they totally changed the health discourse.
I can easily see this happening again with enhancements. I am a high functioning whatever. I am a luxury addition. It’s the reality. But a lot of our people are not. They never get the chance of getting education. In many countries, we are still an institution. If you’re going for income — what I look at the latest 2014 labor statistics in the US, disabled people who are working are only 20%. So 80% actually do not work. So that means people who look for work and can’t find work and people who don’t even bother looking for work. So if you look at back, we are 80% and that’s actually the same number which was 100 years ago. My students did some research and we found numbers from 1904. Absolute employment numbers actually did not increase in 100 years. So when people talk about statistics, say 20% unemployed, they only look at people who are actually looking for work and can’t find it. But the number of people who don’t even look among disabled people is much, much greater than the average population. You have to have both parts in there to see really what is the level of employment.
And then the people who are employed often are not getting much of a salary, so how many of us can really do advocacy? How many of us can do advocacy in fast-moving fields? I can do this because I did the technology stuff for 20 years. But how can our people really move? Which disabled person has the time to learn about this in a speedy fashion that they can actually shape the discourse? They can’t. So we have a few, but if N=1 or N=2 who can do it, and that doesn’t lead to a movement. Because the reality is most of them still fight for daily survival. So that’s where the problem is.
I have one of my students who moved away from governance to anticipatory governance, which means you already want to anticipate what the problems will be, but that means you have to be very knowledgeable to be part of it. That makes for disabled people who need anticipatory advocacy. It was my student who coined that term. If we can’t even do advocacy because there’s no money available, anticipatory advocacy is even worse to do. I can speak, but when we’re looking globally or even in Canada or the US, there are very few of us who can speak.
I think the increase in innovation cycles is totally disempowering, not just to disabled people but the same to indigenous people, the poor, immigrants. I think all of the socially disadvantaged groups — the faster change is happening, the less they can actually influence the change, because they are just in opposition to step up to the plate in enough numbers to really change the discourse before it’s too late. This increase in speed is really disempowering.
WADE WINGLER: I’ve never thought about it that way, but you’re exactly right. That makes sense. And now I’m sad.
[Laughter]GREGOR WOLBRING: We should have recorded this. Just in case.
WADE WINGLER: Yeah, right. Wow.
GREGOR WOLBRING: So this is where I come from. We make a lot of assumptions. I was part of the center for knowledge in society. Based on cycling disability onto the play. The never worked out properly despite of their desire because there were no disabled people who even wanted to involved in nanotech because they’re still fighting the daily fight of survival. They had no people who could really jump onto that topic. So I published for four years. That’s all open access of people whatever they find access down the road can use the stuff.
But the reality is — I have a student working on access to water and sanitation. And we still don’t have access to the right washings. We have a lot of wheelchair signs on washrooms, but that doesn’t mean they are really accessible. There are two YouTube’s online from one of my students where she want to washrooms in Calgary and Moores which are officially wheelchair accessible and showed how much — I mean, I think of the 12 she looked at, not one was really wheelchair accessible or had problems. So those two YouTube clips online deal was that.
And we had a survey out where people were asked about this situation and disabled people in higher income countries were ranked lower as having problems then indigenous people and immigrants. People think we solved the problem because the narrative is everything is accessible. So in people’s minds, it’s not a problem anymore. How can they say that an immigrant has less problems with water and sanitation access than disabled people? So it’s pure perception. It has nothing to do with reality.
WADE WINGLER: Yeah, no kidding. So Dr. Wolbring, I didn’t shut off the recorder. I always just let it run. How would you feel about my using some of this as kind of an extra episode for people who are interested to continue on? Are you okay with that?
GREGOR WOLBRING: Of course.
WADE WINGLER: Was that a yes?
GREGOR WOLBRING: Yes.
WADE WINGLER: Skype burped so I wanted to make sure. Because I think I will use some of this. I’ve never done an add-on episode, but this is fascinating stuff so I think I might go ahead and include that.
GREGOR WOLBRING: And we can also talk more once we are at RESNA. The thing is, I published one around hearing. We interviewed as part of that with people from the World Federation of the Deaf. People assume that disabled people go for the enhancements because if you have a choice — and that’s where the OT people get the program. If you have a choice between getting fixed to the norm or getting fixed that you outperform the norm, what would you choose?
WADE WINGLER: Especially if you been in a situation where you’ve been underperforming all of your life, you certainly want the opportunity to just go ahead and overshoot the norm.
GREGOR WOLBRING: Exactly. And of course the people who want to push enhancements use disabled people like that. Because they see that the group is so disempowered. If you give them something where they can outperform their aggressor, if they have access, of course they would do that. Why would they stop at the typical? If the technology goes beyond what I called therapeutic enhancements.
So once they have it, then of course others wanted, and that’s where noninvasive comes into play. If it’s invasive then it would just they with them, but if it’s not invasive? No one with legs really wants to have the bionic leg from Pistorius. They would first have to amputate themselves. But exoskeleton? Why not? But disabled people, if you don’t accept them for who they are, then obviously they will go for enhancements.
I have no legs. People would notice on this show. I was wearing legs since I was three years old, but all the time it was an identity, and I walked mostly like John Wayne. Because I was born like that, having no legs is my identity and crawling is my identity, so I love to crawl. So I don’t use legs in the house or something. I don’t use legs at all because crawling and using a wheelchair is more efficient than using legs.
But the thing is we have the narrative even in the disability movement where we demonize crawling in order to justify legs and so on. So we demonize things where we then play into the hand of others to further normalize us. Crawling is okay. Obviously you don’t want to get dirty outside so therefore you wear some, either a wheelchair or legs.
You can easily have a narrative without demonizing crawling. Unfortunately a lot of people buy into that and actually demonize them, because they view crawling as undignified. In my house, I just a use any. I crawl and then I just jump onto my chairs and so on. I don’t use any wheelchair in the house. It’s about a narrative. It’s about perception. It’s about efforts. Are you really allowed to be at ease with you are or are you so much inert that you have to adhere to other people’s expectations? So self-identity security is, for me, a very important issue. I can really be at ease with who I am, not constantly fulfilling what other people’s expectations are of me. That’s what ableism is. Ableism has self-identity security. Because you all the time have to fulfill other people’s expectations.
WADE WINGLER: That’s very interesting stuff. And you’re right. I’ve been working in the field for 20 years and have never really been able to explore that and wrap my brain around it. That’s fastening stuff.
GREGOR WOLBRING: I look forward to talking at RESNA. I arrive there — I don’t whether you are there the whole time. I arrived on Friday and I leave on Sunday afternoon.
WADE WINGLER: I’m going to be there the whole time and I’m going to bring a portable recorder so that I can record some people were there just to kind of get the man on the street perspective and those kinds of things. I would love to sit down and visit with you more. That would be great.
GREGOR WOLBRING: I look for to it.
WADE WINGLER: Thank you so much for the conversation and for the interview today. This is a fascinating topic and I hope you enjoy RESNA in Indianapolis. Have you been here before?
GREGOR WOLBRING: No. Indianapolis is the first time.
WADE WINGLER: It’s a nice city. 15 years ago, the downtown area wasn’t so nice, but it’s a lot nicer than it used to be. Hopefully we’ll have good weather. If you are a baseball fan, the hotel is right next to the baseball park. So there’s some fun stuff there.
GREGOR WOLBRING: A lot of Indy car, NASCAR, all of that.
WADE WINGLER: Absolutely. In fact, my guest last week on the show was a man named Sam Schmidt who, if you haven’t heard of him, was a very successful Indy racecar driver, incurred a spinal cord injury in 2000, and now he owns a race team.
Last weekend at the motor Speedway, he was in a modified Corvette and drove at 100 miles an hour around the racetrack with head control. So he’s got some had sensors and a bite that said that activates the brakes, and the GPS keeps it was in a 30 or 40 foot path so it will correct him within those parameters. But within that 30 or 40 foot path, he’s totally autonomous with his driving. So that maybe local and some national news.
GREGOR WOLBRING: The majority are born without arms and some without legs, but we also have people without arms and legs. Every country has different technical solutions for driving. Without arms and legs and Dave been driving for a decade. It’s actually nothing new. They use voice control and they have some sensors and the headset where they can just move their head to activate certain things. They steer with something like a pencil in their mouth. So that’s existed for quite a while without the GPS and so on. But of course in the future we have self-driving and that’s no problem anymore.
WADE WINGLER: I’m looking for to that because I commute an hour each way and I’d love to get some work done on the drive.
GREGOR WOLBRING: That’s why I tend to not live far away from where my workers because driving is just a waste of time. You can’t do anything during that.
WADE WINGLER: That’s true for me to. But also feel like sleeping is a waste of time.
GREGOR WOLBRING: But that can you stop. But the car you can’t do. You just have to drive it. That’s why I prefer to live a very short distance from where work so I don’t waste my time at the car.
WADE WINGLER: Excellent. I will see you in just a few weeks. Thank you again for the conversation. I look for to meeting you face-to-face.
GREGOR WOLBRING: Thank you.
WADE WINGLER: Take care.
GREGOR WOLBRING: You also.
WADE WINGLER: So that’s a little bit different approach than we’ve taken with interviews in the past and some extended content. I would love to know as to whether or not that was useful. If you like that, give me a call or shoot me a note on Twitter and let me know if you’d like to hear more of that kind of content, and little more relaxed, a little less edited, a little more conversational. You can let me know by calling 317-721-7124, shooting us a note over on Twitter at INDATA Project or visit our website@eastersealstech.com. Click on the contact button. I’m Wade Wingler, and this is been your extended version of Assistive Technology Update.