NEAL CONAN, host:
This is TALK OF THE NATION. I'm Neal Conan in Washington.
More than two million of us get around in wheelchairs. To learn more about what their everyday lives are like, filmmaker Gretchen Berland gave three people video cameras to give us a look at life from their point of view. A documentary edited from their footage shows minor annoyances - why does everything you want in a grocery store seem to be on the top shelf - and outrages, too. Endless struggles with bureaucracy that in one case left a woman stranded in a broken wheelchair 10 feet outside the door to her house.
Gretchen Berland is also a doctor who teaches at Yale University School of Medicine. In 2004, she was awarded a MacArthur fellowship, a so-called genius grant, for her research on the relationship between physicians and patients. And part of her hopes in this project is to teach doctors about their patients' lives outside of clinics and hospitals.
Later in the hour, we'll talk with the husband of Ingrid Betancourt, who's been held hostage in Columbia for almost six years now. Earlier today, Columbia's main guerilla group, the FARC, released two other women hostages.
But first, the everyday lives of Americans in wheelchairs. If you're in a wheelchair, what do you see that most people don't? Our number is 800-989-8255. E-mail us email@example.com. And you can join the conversation on our blog at npr.org/blogofthenation.
Filmmaker and physician Gretchen Berland joins us now from the studio at Yale University in New Haven, Connecticut.
And thanks very much for being with us today.
Dr. GRETCHEN BERLAND (Director, "Rolling"; Professor, Yale School of Medicine): Thank you for inviting me, Neal.
CONAN: And let me get back to that scene I just mentioned. One of your stars, a woman named Vicki Elman has a series of problems with her wheelchair. In her case, she has is a powered wheelchair. She's coming back home from an appointment, the chair fails. The driver of the van she uses is not allowed to take her inside her house and she's left 10 feet from the door.
(Soundbite of film "Rolling")
Ms. Vicki Elman (Associate Director, "Rolling"): (As Herself) I was in the (unintelligible) calling 911, but my cell phone doesn't have a signal here, so I can't call anybody, either. So I'm just stuck here.
CONAN: If you have trouble hearing that Vicki couldn't get a signal on her cell phone to call 911 and begins to worry that she's going to have to spend the night there in her chair.
And, Gretchen Berland, in the face of incredible frustrations like that and other indignities, Vicki also tells us how she fights to keep her independence. Gretchen.
Dr. BERLAND: Neal, are…
Dr. BERLAND: Yes.
CONAN: I'm asking you about that.
Dr. BERLAND: I'm sorry.
CONAN: It's okay. You know, we're working to play another cut of tape there.
Dr. BERLAND: You know, she - you are going to or you're asking me.
CONAN: No. We weren't. No, we were asking you.
Dr. BERLAND: You weren't - she - you know, Vicki is just extraordinary. I mean, I think the scene that you just played - when you watch that the first time it's just - you're absolutely speechless. And yet, in spite of this, in spite of sort of the - every day, there was something in Vicki's life that is difficult to do. And yet, she continues to live independently and want to live her own life.
And half of the footage that all of three participants filmed was about, really, life in a wheelchair. It wasn't about some of the stereotypes about how hard it is, and there's plenty of that in the film. But Vicki is a very avid disability rights advocate. She is out of her house every day. She is going to the gym. But I think that scene, in particular, is just so - particularly when you watch the sunset as she's waiting outside, hoping that someone would drive by and bring her in her house, to me was - when you watch it the first time, it's just - you can't believe that this is happening in the United States today.
CONAN: And the frustrations - we've all had frustrations dealing with insurance companies and government bureaucracies, but this seems to build to impossible level.
Dr. BERLAND: Well, yes. There was one time when Vicki's wheelchair had broken and she has been back in a nursing home. And her insurance company didn't order or authorize the appropriate chair for her. They authorized a chair that was $4,000 cheaper than the wheelchair that she needed and that chair ended up actually giving her a decubitus ulcer, which put her back into the nursing home.
So I remember I called the insurance company and asked them, I hope that they - that the phone conversation that they were having with me that they were actually recording it, because at that point, it's just like beating your head against the wall. I mean, you're so frustrated that it's almost tough to ask that you're trying to get help from a system that in theory is designed to help you and you get nowhere, and I don't have to live this every day.
I'm - you know, I get to go home. I get to walk home. I get to walk into my car, and watching Vicki continues to fight and not become angry or bitter was an extraordinary learning experience for me. But it made me - I felt that oftentimes, Vicki's life - what happened or how she lived her life was in spite of the health care system not what we were doing for her in any way, shape or form.
CONAN: If you get around in a wheelchair, call us and tell us what you see that we don't. 800-989-8255. E-mail is firstname.lastname@example.org. And let's begin with - I'm sorry, what's your first name? Tail(ph)? Ted(ph) - excuse me. Ted in Columbia in South Carolina. I was going for something obscure and turned out to be Ted.
TED (Caller): It's Ted.
CONAN: Yes, go ahead please.
TED: Well, I just wanted to point out the avoidance that I tend to get from people, of course, looking away, tend to feel a distance between people. It's just seemed - to be a part of the human race, so to speak. But that's the biggest concern I have. Mostly more are extremely helpful or try to be. But there is that distance between a lot of people, particularly in a crowd. It seemed to be an annoyance.
CONAN: How long have you been in a wheelchair, Ted?
TED: Nine years.
CONAN: So you're - do you ever get used to it?
TED: You tolerate it. I don't know about getting used to it. But, you know, you make the best of things.
CONAN: Do you ever feel like sending up a rocket flare or something like that and saying, I'm here. Would you pay attention to me?
TED: Yes, I do, at times. It's rather frustrating to be ignored or avoided, so to speak.
CONAN: And when people don't look at you, what do you think when that happens?
TED: Well, it's really - yeah, I guess it's embarrassing more than anything. It's - they don't recognize you as being a person like they are.
CONAN: Mm-hmm. Well, thanks very much for the call, Ted.
TED: Thank you. Bye.
CONAN: Bye-bye. Good luck to you.
CONAN: And Gretchen Berland, I have to say one of the more affecting parts of your show is that when we see these three people in wheelchairs in various settings and, indeed, you can see people not looking at them.
Dr. BERLAND: You're right. I mean, it's called - the official term for it is gaze avoidance. And it happened in - the three participants filmed over 200 hours of footage and I spent two years in the field with them. So I got to see it and I think any family member or any person in a chair will tell you about this that there's something that - and Galen has written about this. There's the notion that somehow people don't make eye contact with you, they avoid you. And I've watched it in footage and it's, you know - how you can change society behavior, how you can get society to see that they're doing this. And what Ted described, I understand completely and the three people in the film showed us that.
CONAN: She just referred to Galen. That's Galen Buckwalter, another of the stars of "Rolling" and also, like the others, listed as an associate director of the film. He joined us now from the studios of KPCC in Pasadena, California.
And Galen Buckwalter, nice to have you on TALK OF THE NATION today.
Dr. GALEN BUCKWALTER (Associate Director, "Rolling"; Research Psychologist; Vocalist, Siggy): My pleasure. Thanks.
CONAN: And you've been in a wheelchair over 30 years?
Dr. BUCKWALTER: Yes.
CONAN: And I wonder that effect that we were just talking about with Ted, looking over the top of the person in the wheelchair. That's something we see in the film over and over again.
Dr. BUCKWALTER: Yeah. It's part of the experience and actually it's one of the motivating factors for me to get involved in this film. You know, I thought that if - by just showing people our lives day in, day out that that knowledge would hopefully kind of, you know, desensitize people to the experience. I mean, you know, that we are essentially, you know, the same. We just have a different, you know - some differences.
CONAN: Some differences and we see them much more even if we are among those people who do look at people in wheelchairs. We don't often see them as we see you, struggling to get in and out of your car. There's a scene where the fuse that adjusts the seat in your car is broken. And it's been set for your five-foot tall wife. And you're trying to get in and drive.
Dr. BUCKWALTER: That actually wasn't my scene but…
CONAN: Oh, I apologize.
Dr. BUCKWALTER: Those types of inconveniences are - I mean, we're dependent on technology day in, day out. You know, for our chairs, you know, the vehicles, the equipment adds a layer of, you know, dependence that most people don't have to deal with.
CONAN: Mm-hmm. And as you went through this project, were there parts of this that you would rather not have included?
Dr. BUCKWALTER: I saw parts of myself that I was entirely comfortable with, I think. You know, I saw how I'd - at times, I think, have let the fact that, you know, I have been exposed to, you know - been expected to act disable then. I kind of take the role of a disabled person on and kind of act like, you know, like I had think people want me to act.
Dr. BUCKWALTER: Which is, you know, kind of an odd experience to see.
CONAN: See yourself disembodied like that or, again, from another perspective. Yeah.
Dr. BUCKWALTER: Yeah. Just that, you know, I'm acting in a way. Particularly, it was apparent to me when I was dealing with my physician that I tend to act like a, you know, the good patient and not, you know, be more forceful on letting him know what my issues are. And because I think physicians don't necessarily have a lot of exposure to disabled people either. And they may not be aware of the specific issues. They may not take the time to make themselves aware of the issues that we face.
CONAN: We'll talk more about that in just a couple of minutes. But I also wanted to mention there are some things that people would not expect from you. In fact, you're the lead singer in a rock 'n' roll band.
Dr. BUCKWALTER: Yes, indeed. Siggy, with an S.
CONAN: Siggy with an S. And there's a scene of you rehearsing. And well, we're going to go out at this segment, listening to a tune from Siggy's album, which we see you in the film getting the first CD presses from a triumphant moment from you. This is Galen Buckwalter's band, Siggy. Stay with us.
I'm Neal Conan. This is TALK OF THE NATION from NPR News.
(Soundbite of music)
CONAN: This is TALK OF THE NATION. I'm Neal Conan in Washington.
Over two million people in this country use wheelchairs to get around. We're talking about life from their point of view this hour. There's a new documentary about life in wheelchair, it's called "Rolling." And it consists mostly of footage filmed by three participants with video cameras mounted on their wheelchairs. You can watch clips from "Rolling" at our Web site at npr.org/talk.
Galen Buckwalter, as we mentioned, one of the participants in the film. He's with us today. Also, the director of the film, Gretchen Berland, who's also a doctor. And, of course, we want to hear from you, especially those of you in wheelchairs. What do you see that we don't? 800-989-8255. E-mail us: email@example.com. And you can check out our blog at npr.org/blogofthenation.
And let's see if we can get another caller on the line. This is Sandy(ph). Sandy with us from Cleveland, Ohio.
SANDY (Caller): Hi, thank you for taking my call. I'm both a physician with many patients in wheelchairs and a mother of a son in a wheelchair. He is a beautiful 11-year-old boy and has been in the wheelchair since birth.
My comment is this. It's actually the adults that have the avoidance. My children don't have that same avoidance technique. Children are very curious about him. He's cute. And they want to come up and talk to him. And parents are so concerned about political correctness or not hurting so much feeling. And they actually scare their children away from asking questions. And I just wish they would have that same openness that their children do, to come and ask why is he in a wheelchair, why is he different.
SANDY: He would love that interaction.
CONAN: Galen Buckwalter, have you experienced?
Dr. BUCKWALTER: Oh, that's a great point. Kids are so refreshing. You know, there is no fear. There is no, you know, viewing me as some - well, they recognize the differences but they just put it out on the table. And that's all that we can ask for. Just honest interchange.
CONAN: Here's an e-mail we got on the same point from Daniel(ph) in St. Louis. When I see someone in a wheelchair, I look away only because I don't want to seem like I'm staring. I don't think any less of handicapped people. And I fear many people feel the same way.
Dr. BUCKWALTER: I mean, you don't need to stare. But don't avoid either. You know, we know that there are differences. We have to negotiate. It's much easier if we can do it openly.
CONAN: Sandy, let me ask you. Just before the break, Galen said something I thought was quite interesting. He said he didn't think a lot of doctors had experience with people in wheelchairs. And obviously, you're a little a bit different from that. But would you agree with him?
SANDY: You know, it's interesting. I have a lot of patients who - I'm an internist - and who have MS. And maybe it's because - interestingly to have referred other people to me who have MS. Maybe it's because I'm so comfortable with them. And I can talk to them about how to manage problems with the wheelchair. We have an expensive wheelchair, and sometimes at the hardware store, buying parts to make modifications to it, wheelchairs, particularly because insurance would never approve of the smallest things. So I think I'd probably have more experience with patients with wheelchairs than other people and I think it's just because I have them referred to me because of my comfort level.
CONAN: Okay. Thanks very much for the call, Sandy. I appreciate it.
SANDY: Thank you.
CONAN: And we wish you and your son the best of luck.
SANDY: Thank you.
CONAN: I wanted to ask you, Gretchen Berland, to what degree did you hope that physicians would learn something from this film?
Dr. BERLAND: I - you know, I think that any person can learn something just from this film. But, you know, physicians, we don't - most medical schools don't have formal curriculums related to caring for disabled persons. Most patients who are in wheelchairs, and Sandy said - Sandy's an internist like myself - many patients who are in chairs don't see physical med rehab programs, which is a specialty that is - that are trained for taking care of disabled persons.
So I think physicians - I think every physician tries to do their best by their patients, but it's clear that what the three participants filmed were there are times that we really - there were big gaps in terms of how we were interacting with them that we can do a lot better. And it's not about - a lot of it is not technology, some of it is just simple common courtesy - sitting down, taking a time and thinking about what someone might be experiencing before they come and see you.
So the film in some ways is directed towards a number of audiences. It's for health care professionals and that extends beyond physicians - that's physical therapists, nurses, nursing aides, a whole group of people. But I think there also - all of us can learn something from what these three people showed me.
CONAN: Let's see if we can get Wesley(ph) on the line. Wesley, with us from Lapeer in Michigan.
WESLEY (Caller): Yes. Yes. I'm here.
WESLEY: And my comment is I often have trouble finding doctors who will listen to what I have to say rather than taking a look, making an assumption and the diagnosis before I've even finished talking.
CONAN: Can you give us quick for instance?
WESLEY: Just recently, I needed to go in for - I had a medical problem. And I tried to make an appointment only to find out the current doctor I had, which I haven't seen for six months, had moved their office to another town. So I was attempting to get assigned to a different doctor in our local area. I got into his office; he took one look at me and said, oh, you're diabetic. Your problem is so, so, so. And I am not diabetic. I've never had any of that type of problem. But that was his automatic assumption with what my diagnosis was before any test have even been run.
CONAN: And, again, Galen Buckwalter, I wanted to ask you if that sounds familiar.
Dr. BUCKWALTER: Yeah, all too familiar. And I think, you know, there - to find a physician that sees patients with specific disabilities can be so helpful. But that's not often the case in managed care. And, you know, you end up, you know, seeing a physician who doesn't see, you know, the complexity - I mean, typically, people with disabilities have comorbidities where, you know - I mean, I'm a spinal-cord-injured patient, I have high blood pressure. And my high blood pressure is very volatile. It's not like typical high blood pressure.
And, you know, there's literature available for physicians if they take the time to look at that. But, you know, I mean, with the managed care and, you know, the pressure that insurance companies put on physicians, you know, it's really hard for them to, you know, take the time to look at the complexities of the issues that are often there with disabled people.
CONAN: Thanks for the call.
WESLEY: Thank you.
CONAN: All right. Bye-bye. We - Galen Buckwalter just mentioned he's in a wheelchair as a result of his spinal cord injury. Vicki Elman, we heard from earlier, has multiple sclerosis. And the third participant in the film, the third star, if you will, the third associate director is a man named Ernie Wallengren, who is diagnosed with ALS, or Lou Gehrig's disease, and that confronted him with very different problems than the other two.
(Soundbite of film "Rolling")
Mr. ERNIE WALLENGREN (Associate Director, "Rolling"; Writer and Part-time Basketball Coach): I have (unintelligible), so what? This is going to suck. All right. This is a tape about what's it's like to have ALS. What it's like to live in a wheelchair. What it's like to live inside the walls of my house. When - the son who plays his drums.
CONAN: And Gretchen Berland, that mordant sense of humor…
(Soundbite of laughter)
Dr. BUCKWALTER: He's got to be.
(Soundbite of laughter)
Dr. BERLAND: Yeah.
Dr. BERLAND: You know, Ernie…
CONAN: It's all timing. You know.
Dr. BERLAND: Yeah. You know - and Ernie is, you know, part of the process of making "Rolling" as we - this interactive(ph) process so we screen the footage with the participants and their family members. And when Ernie's mother saw this clip, she said, Ernie, you were born bored.
(Soundbite of laughter)
Dr. BERLAND: But, you know, Ernie, as you were right, Neal, his trajectory from sort of living the experience of being in a wheelchair became very quickly within probably the first six weeks given what was happening with his ALS, became mostly about ALS. And many of the decisions that he was wrestling with around choices in terms of care. And he did those mostly in his bathroom, in front of the bathroom mirror which you'll see if you watch, as you've seen if you watched the film.
Dr. BERLAND: But, you know, Ernie - I think each Galen, Vicki and Ernie, and Ernie in particular, really talks about the balance between living independently and what it means to be human and burden. And that was a pendulum for him. It wasn't a static concept that would - it would swing back and forth depending on what was going on. And that was something that he wrestled with. And then would always see as humorous as the foil, the sort of just when you thought he couldn't take it, he would come back with: the son who plays his drums.
CONAN: Let's see if we can get another caller on the line. And this is Derek(ph). Derek with us from San Francisco.
DEREK (Caller): Yeah, hi. I'm an able-bodied person. But I have a really fantastic learning experience about this taking a course in wheelchair designing construction at San Francisco State University. So I just wanted to share that and explain to you what it was like. So we were designing wheelchairs that are intended to be built in developing countries where they don't really have a wheelchair industry. And so, you know, try to introduce wheelchairs basically in some parts of the world where they are not available.
And so each semester, the class tries to optimize the design and get it a little bit cheaper. And so they built sort of another iteration on their prototype. And then the project of the class is to build that prototype. And so, you know, we're learning about, sort of, the ergonomics and what's comfortable and what's, you know, what breaks easily and, you know, we spend the first half of the class during this semester actually sitting in the chairs - going, you know, and then going around campus. We all go like have dinner together riding the same chairs that are like, you know, chairs that exists in China or chairs from 50 years ago or 20 years ago.
CONAN: That's interesting.
CONAN: What did you - what was your most important lesson as you rode around in a wheelchair as a person who's abled?
DEREK: Well, so the - I think it was called gaze avoidance.
CONAN: Yes, we've mentioned that before.
DEREK: Like you guys mentioned before. I experienced that tremendously. And I felt that, you know, people - passersby would be so self-conscious about the appropriateness of their reaction. That they would be just sort of uncomfortable and not uncomfortable on my account but uncomfortable because they were sort of - they were embarrassed to see - they were embarrassed about whether they might be acting sort of appropriately. Like…
DEREK: I think people wanted to accommodate me, but they felt…
CONAN: Yeah. Galen…
DEREK: (Unintelligible) with me.
CONAN: Galen Buckwalter, I wonder, do you have any advice for wheelchair manufacturers?
DEREK: The manufacturers…
CONAN: Hold on. Go ahead, Galen.
Dr. BUCKWALTER: I think the approach of the caller is right on. To spend time in chairs and, you know, expose yourself to our needs. And, you know, it seems like that, you know, the experience of the caller in actually, you know, being in a chair, kind of, you know, desensitized him. And I mean, basically, that's the goal of this film. It's to see what we, you know, experienced and, I mean, we're not living another life, we just have different issues to deal with. And people, you know, it's not things that you want to have to deal with, but, hey, you know, stuff happens. And everybody, at some point in their life, is going to have some degree of disability to confront.
CONAN: Thanks very much for the call, Derek.
DEREK: Yeah. If I can make one comment of what I learned, you know, what I thought came to prefer as the best reaction from an able-bodied person was to just say something like - like, say, someone's struggling to get you to get up a ramp or something - to say something like you let me know if you need a hand rather than to kind of stare at me and wait to help or to like effusively offer help.
CONAN: Okay. Thanks very much for the call. Again, appreciate it.
CONAN: We're talking about the film "Rolling" with one of its participants, Galen Buckwalter, and with its director, Dr. Gretchen Berland. You're listening to TALK OF THE NATION from NPR News.
And let's see if we can get - this is Brenda(ph). Brenda is with us from Rockford, Illinois.
BRENDA (Caller): Hi and thanks for taking my call. And thank you Gretchen for making this film. I think this is something people definitely need to see. I wanted to tell you about an experience I had while I was employed at a Center for Independent Living in Pittsburgh, Pennsylvania. I was visiting a resident of a local group. And I started to feel ill and had chest pains. And so they called the paramedics to take me to the hospital. But the paramedics spent 15 minutes arguing over who was responsible for me before they would even put me in the ambulance. So the problems that physicians have with us are sometimes life-threatening.
CONAN: Yes. I can understand that. And I can hear Gretchen Berland apologizing for her profession.
Dr. BERLAND: Yeah. You know, it's - I would - I'm hoping that there are aspects of the stories that we've heard today and what we've heard on - Galen and I had been looking at some of the blogs where - that these will be something that, five years from now, we won't hear about anymore.
Dr. BERLAND: These will become…
BRENDA: I know there's been a trend where people have had difficulty realizing that I'm responsible for myself. And I know that it's affected friends and consumers that I work with. And so I'm here to just say to everybody who's in that situation, worry about - worry less about whether or not people are competent to make those decisions when they're telling you they are.
Dr. BERLAND: Yeah.
BRENDA: It was probably the most disempowering experience of my life. And I hope that it never happens again.
Dr. BERLAND: I hope it never happens again as well.
CONAN: Thanks very much for the call, Brenda. And again…
BRENDA: Thank you.
CONAN: …yeah. Well, amen to that. So…
CONAN: Galen Buckwalter, I wanted to ask you, toward the end of the film, as it follows you over these two years, you've been having problems with your shoulders throughout. Indeed, there's a scene where you're waiting for 40 minutes in a doctor's office for an appointment, which is telling. But in another context, how are you doing? How are the shoulders? Are you still able to your manual wheelchair? And just to - also an informational question - why do you prefer the manual wheelchair over a powered model?
Dr. BUCKWALTER: Well, I had lived in a manual wheelchair for, you know, 30 years. And wheelchairs are actually very efficient and fun modes of transportation. I mean, you know, when you, you know, get used to it. I mean, you kind of floating down an incline is a great way to, you know - it's a great feeling. I really enjoyed being in a manual chair. You know, as weird as that may sound, you know, it was good exercise. But, you know, I'm - as a quadriplegic, you know, it took a lot of strain on my shoulders. And I did have to move to a powerchair a year, a year and a half ago.
And you know, with that comes increased dependence and, you know, and now, I have to worry about the chair breaking down. I have to worry about insurance. You know, as you saw with Vicky in the film, it's a nightmare to get insurance to keep a chair in working condition, even. So you know, I mean, it was a loss. But you know, it's also, you know - now, I'm, you know, getting around town and, you know. I also got a van, you know, that I will take my powerchair. So you know, it's give and take. You win some, lose some.
CONAN: Galen Buckwalter, hope you're getting around town and making trouble for a lot of people.
Dr. BUCKWALTER: Thanks.
CONAN: Thanks very much. Galen Buckwalter is featured in "Rolling," a documentary by Gretchen Berland that will premier on PBS stations this month. He was with us from KPCC.
And Gretchen Berland, thank you so much for your time today, too.
Dr. BERLAND: Thank you.
CONAN: Gretchen Berland teaches at the Yale University School of Medicine. And her new film is "Rolling." Stay with us.
It's TALK OF THE NATION from NPR News.