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Lily Bandak and San Diego State University professor and Caren Sax

Photographer and advocate, Lily Bandak, and her colleague, San Diego State University professor and administrator Caren Sax, recently spoke with ABILITY’s Lia Martirosyan and Chet Cooper about bringing the link between travel, education, photography and disability into focus.

Chet Cooper: Tell us about your photography background.


Lily Bandak: My family is from Bethlehem in Palestine. We immigrated to this country in 1960, when I was in grade school; I went to high school and university here. From there, I went on to university in Paris and studied painting. When I came back here to the University of Delaware, I decided to take a photography course, and loved it. Then I went to the Egyptian embassy to see if they would pay for me to take a trip to Egypt to photograph there.

Egypt has all this beautiful history; I wanted to capture it. When I came back in the mid-70’s, Jimmy Carter was President, and I got an introduction to the White House photography department head. He liked my work, and wanted me to meet Mrs. Carter; she wanted to make my work part of the permanent White House collection. Everybody at the different embassies heard about that, and that’s when I started doing work with all these countries.

Cooper: What was the state of your Multiple Sclerosis (MS) at that point?


Bandak: I was okay at that point. Then Newsweek heard about my work and approached me. They asked if I could cover the big civil war in Lebanon. The magazine had sent a lot of photographers to try to cover Yasser Arafat, and they had not been successful. Then they heard about me, and I could speak the language, and I am originally Palestinian. So they asked me to go to Lebanon to cover Yasser Arafat, so I did. I don’t know if you heard about the massacre at Sabra and Shatila?

Cooper: No.

Bandak: In 1982, there was a big massacre in those areas, where they killed every man, woman, and child. And I covered it. That’s when I got sick. That’s when the MS started. My nerves just couldn’t take it. I’m not that kind of photographer. I do art photography. In Washington, leading up to that experience, I met King Hussein at the White House. He gave me his card and said, “Why don’t you come to Jordan? Here’s my card. If you want to come, just call the palace.”

(laughter)

Cooper: The words every photographer loves to hear…

Bandak: Yes. What inspired me to call was the fact that I was sitting in Arafat’s office one day, and there was a bombing. This guy runs in with a hand, and says, “What should I do with this?” It was terrible. So I decided to call the palace, and they invited me to go there. When I arrived, I saw the Queen, whom I had met before. And she said she wanted me to teach photojournalism at a new university.

I started the first photojournalism department in the Arab world. But during the year I was in Jordan, apparently I had MS and didn’t know it. I was able to walk, but I started to have problems. I had to use a cane, and my leg would be hard to lift. So King Hussein sent me to London to see a neurologist, who diagnosed me. I didn’t believe him. So I came back to the US, and went to Johns Hopkins and the University of Pennsylvania for a second opinion.

Cooper: When were you diagnosed, and how did that affect you?


Bandak: I was diagnosed in 1984 and decided to quit teaching. I came back to the US and sat around for two or three years; I didn’t want to see or talk to anybody. By then I was in a wheelchair and thinking, “How can I do my photography in a wheelchair?” But then I began to get physical therapy, and my therapist told me about an assistive technology center. “Why don’t you go and see if they can help you?” she said. So I did.

They told me, “There are wheelchairs that elevate. You can photograph high places.” I didn’t think I could do that in a wheelchair. They said that my wheelchair could also decline, and that it could do a lot of things. And they built a camera mount for me on the wheelchair. That’s when I started to go to the Middle East. At the time I was still able to use my hands. And since I was a journalist, I knew a lot of other journalists. In Washington, a friend of mine named Maureen Bunyan, who was well known for her TV show, got in touch with me. I told her. “It’s been a few years since I’ve worked, and I need somebody to sponsor my trip.”

Lia Martirosyan: You were a great networker.

Bandak: I always had help. I don’t know how she did it, but Maureen got in touch with the wife of the ambassador of Saudi Arabia, who also happened to be the daughter of King Faisal, and was living in Virginia. They have a big mansion there. Maureen called her and was told: “You can bring your friend, and the Princess will meet her.” After I met with the Princess, she sponsored my trip to the Middle East. I traveled in my wheelchair, and took a nurse with me. In Jordan, I got in touch with the Lebanese embassy, which arranged for me to go to Lebanon and try to do photography there in my wheelchair.

They also arranged for me to go—have you heard of Hariri in Lebanon? He was the Prime Minister back then. His people arranged for me to go and meet with his sister—who was a member of the parliament—as well as his wife. I asked if I could take photographs. They looked down at me, because I’m in a wheelchair and didn’t think I could do it. So they said, “Okay” just to humor me. And I took pictures of her and her whole family. And when I came back to the US, I developed them and sent them to her.

Martirosyan: Did anything come of it?


Bandak: Later. One morning, at 7 o’clock when I was sleeping, I got a phone call. The Prime Minister’s sister said she couldn’t believe a person in a wheelchair could do such a nice job, and she would like to invite me back to Lebanon to do a show. And the First Lady of Lebanon, she came and hosted the opening. It was a big story, and all the newspapers and TV stations covered it. The TV station, which is owned by the royal family, did an interview with me.

So as I became popular in the Arab world, I asked them: “Why don’t I do something here to get people with or without disabilities to study assistive technology?” Because I was doing all my photography through assistive technology. I saw the need, and have been trying to get more people into it ever since.

Cooper: I wanted to interject one small thing. Those three years that you said you hid away after you were diagnosed; you weren’t alone in the sense that over 50 percent of people with MS have clinical depression as a symptom.


Bandak: Yes. Fortunately it doesn’t affect me as much now. And back then there was so much that I had to give up when I came here. For instance, around that time my house caught on fire.

Cooper: We heard about that.

Bandak: All the negatives, all the pictures were destroyed. The only reason I moved here was because my mother has Alzheimer’s. She can’t even recognize her kids sometimes. It gets me very depressed. I’m trying so hard to do my work, and I really need help to get this project going. I’ve been trying for the last 20 years to get these kinds of studies going.

Cooper: I remember during our joint expo at CSUN, ABILITY showed some Chinese art, and you showed your work- you still have a lot of beautiful pieces. Do you have any of those in digital files?

Bandak: I have some, yes.

Cooper: That’s good. Please tell us more about your assistive technology project?

Bandak: When I lived in Washington. I met with a Prince of Saudi Arabia at a conference. I told him about this program, disabilities, and my idea that they might send some students to study assistive technology. Then he went to Saudi Arabia and talked to some people at a Center for Disabilities. And they sent somebody to San Diego, because I had moved here. They talked to me and Caren, became convinced that this assistive technology program could work, and sent a student with a disability, who is now a second-year student with Caren.

Cooper: So that paid off.

Bandak: Yes, it has. Now I’d like to continue this program with other countries in the Arab world. And I was thinking, since all these companies are there, maybe they could help with sponsorships. What I would love to do is get a building to house the program. The problem was, the girl who came here to study the program, she’s had challenges. First of all, she has a disability, so she brought a caregiver with her, and the caregiver didn’t have a visa, and they had to send her back. So I thought it would be great if we could have a home for students who are disabled, because they’re going to have a hard time. This is a different country. They don’t know how to get back and forth to their classes. They don’t have anybody to help them.

So if we had housing and other facilities for them, we could support these students when they come to study in the program.

Cooper: So part of your concept is to provide housing and support, as in assistive housing?

Bandak: Yes, that’s what I would like to do. And get a van to take them to school. I would like to start something like that.

Cooper: What about the curriculum itself? Has that all been established?

Bandak: Yes, I got the curricula from Caren. There are a variety of 16-week courses that they can take, and there is also a path that can lead to a degree, if they want one. That will take a few years.

Have you heard of ADC? It’s the biggest Arab-American organization. It’s headquartered in Washington. American Arab Anti-Discrimination Committee. Dr. Clovis Maksoud, you met him. His wife was the president. Clovis used to teach at American University; he had his own department. Do you know anything much about him?

Cooper: I know that he has a book of his memoirs, and I was thinking about looking at it, because he gave a brief background which was pretty impressive.

Bandak: Clovis was the Arab League ambassador for 15 years. He’s now a UN advisor. His wife was the president of the ADC. Clovis was also the editor of the biggest newspaper in the Arab world. I’ve known him for 30-some years. He is on the board of my non-profit. At his age, he does so much. I wish I were in Washington. I could get things done a lot faster there.

Martirosyan: What would you like to get done faster?

Bandak: There isn’t one assistive technology center in the whole Arab world except in Qatar, and the one there is run by someone from England. They always have to bring somebody from Europe or the US. I would like to bring people to learn about assistive technology so they could go back to their countries and help people with disabilities.

I get emails from Lebanon, which has a high percentage of people with disabilities. They really could use that. I’ve been in touch with the American University in Beirut. It’s a great school, one of the best in the world. And I got in touch with the dean about starting a department, they could just add an assistive technology component to the computer department they already have. The University of Delaware’s computer department has an assistive technology component that addresses disability. The University of Delaware is working on robotics. I don’t expect that in the Arab world, but anything simple to help them would be an improvement. But the AUB wasn’t interested. There are a lot of people with disabilities who could benefit from these technologies that I use.

Cooper: By assistive technology, you mean the full scope of technology, not just computer access?

Bandak: Yeah, it’s not just computer access; it’s environmental controls. It’s a lot of things. In the Arab world, people who are disabled would like to be able to control their TV. It’d be great if you can’t use your hands to have controls like I do, and to be able to turn the lights on and off.

Cooper: Do you do a lot of Skyping?

Bandak: Yes, I Skype. I’m so far away from everything. When I was living in Delaware, if I wanted to get things done, I would go to a politician. Here, if you want anything done, you have to go to Sacramento. That’s pretty far for me to go. Like, my senator in Delaware was Joe Biden. He did so much for me. I’m hoping that Clovis and the Ambassador will come as they said they would.

Cooper: Yes, in September.

Bandak: I hope we can get things going.

Cooper: You mentioned that you’ve already had a student out here.

Bandak: We’ve had more than one student from the Middle East. We had that one girl who came from Saudi Arabia sponsored by the prince, and there’s another girl from Iraq. She’s studying to get her master’s. She comes here a lot, and said she would love to meet with the Ambassador and talk to him about the program.

Cooper: You mean she comes to your house?

Bandak: Yes.

Cooper: And she’s also in the assistive technology program?

Bandak: She’s with the rehabilitation department at the university, and they have classes in assistive technology.

Cooper: Are they typically students with disabilities, or without?

Bandak: With and without. Some people with disabilities can learn to help themselves, and they also want to learn so that they can help other people with disabilities, such as in nursing.

In assistive technology, they can get a master’s.

Cooper: Your concept includes housing the students, are you looking at getting an apartment building?

Bandak: It doesn’t have to be an apartment building. It could be a really big house, like I did this one. This used to be about four rooms. I opened it all up so I can get around in a wheelchair. Everything is accessible, the bathrooms and everything. There are a lot of people here from Iraq, by the way. They need jobs. We could get them to drive those students to and from school. And they speak their language, so that would be helpful. I can get people like the girl who just left. She’s from Iraq and works for me. You’ve been to Jordan? To Petra?

Cooper: Yes.

Bandak: Twenty years ago, I wanted to photograph Petra so badly. And Queen Noor helped me so much; she got me a truck from the army, and they put in a ramp so I could roll up onto the truck. They took all the seats out, and I went down there and photographed Petra. Everybody would see me in the street and they would stop. They couldn’t believe it; it was the first time they saw somebody in the street with a wheelchair.

Cooper: When you say that, do you mean a large power chair?


Bandak: Yes, a power chair. You didn’t see many people in wheelchairs in the streets 20 years ago. Maybe now, I don’t know. About six or seven years ago, I got an email from the State Department. A friend of mine said, “Read this article.” It was about an organization for kids with disabilities that was trying to raise money. They were selling the paintings their kids did. But at the event, only the parents showed up. They didn’t bring the kids because they were too ashamed to show them. You know?

But through assistive technology, the kids are able to do things. They’re able to go to school and learn, to be regular people in society. The reason their parents were ashamed of them was because they couldn’t do anything. But I think assistive technology can help them do a lot.

Cooper: We met the person from Al Jazeera’s Washington office. Tell us the story about him.

Bandak: In 2008, he interviewed me for Al Jazeera. He even sent people to Delaware to come and photograph my house, and the apartment controls. He was great. I asked him at that time if he would be a member of my non-profit and he said yes, he would. He and Clovis have been behind me.

Cooper: How did you meet Dr. Clovis?

Bandak: I met him in the late 70’s.

Cooper: At a Disco?


Bandak: (laughs) No, he was the ambassador of the Arab League. At that time I was a student. It was around 1978. That’s when I told you I was looking to get somebody to sponsor me to take a trip to the Middle East so I could go and make photographs. So I went to him.

Cooper: You’ve stayed connected all these years?

Bandak: Yes. His wife would come to my exhibits, and she bought some of my work. I used to call her every night before she died. We became pretty close. I would tell her, “Don’t give up hope.”

Cooper: Clovis seems like a really sincere person. When we met him, he said, “I just told Lily how illiterate I am on the subject [disability], to expect the worst. It might not be the worst, but one grade above worst,” and we laughed, and he went on: “We think that by helping communicate our deficits in knowledge and commitment, we might be able to have others emulate that, and become interested in support and empowerment for the people who are in this category.”

Caren Sax: You met Dr. Clovis?

Cooper: We met him and Ambassador Al Kuwari. They’re looking forward to coming out.

Sax: I met with them when I was in Washington, DC in April. That’s what they talked about.

Cooper: Do you have a lab set up?

Sax: No, there’s no lab. Our students learn and do the work in the community where there are other centers. We could go to the high-tech center at San Diego State; there are high-tech centers at every community college in the area. Most of them have our graduates who work there. The independent living center has AT services, the center for the blind. There are a number of places that we access for student training.

Cooper: If I understand you correctly, there are only a couple of students who’ve come from the Middle East thus far.

Sax: We have a new one coming this fall. We’ve talked a lot about raising awareness in the Middle East around disability and using assistive technology as a vehicle to do that. But at this point, a lot of the work that we do in my institute is more capacity building than “we’ll come in and do this for you.” That’s more the approach, and they were obviously very interested in that. The student we have in the program now, and the one who is coming, are both very interested. One, from Kurdistan, will be graduating this year. She would like to see things change. She’s in my assistive technology specialization, and is interested in helping.

But bringing one student over at a time will limit the impact, so the idea that Lily and I talk about is having one country or a group of them support smaller groups of students with scholarships. It’s much easier to effect change if you’ve got a group of people who have common knowledge and complementary skills, than one student going back and saying, “Okay, I want to change the world!” And we know that. We’ve all been involved in change efforts, and change comes slowly. In the Middle East, they’ve got a whole lot of other things on their mind rather than doing this work.

Bandak: Look what is happening with all these conflicts. It creates more people with disabilities.

Sax: That’s right, more and more people. So the idea is to bring in a cohort of students, whether from one country or small cohorts supported by several countries, who would come here to study together. We would work with our language institute if there are language issues. I know Nora, who has been with us a year, and her English is very good, but she felt like she wanted to take some classes through the language institute more for writing, so she took some classes. We had her take one of the rehab classes just to get started while she was finishing up her English classes, and she’s doing great. She’s got a disability herself, so she knows. She’s had treatment, knows how people get treated and is very interested.

The student coming in this fall started at another university. It’s very difficult for her. She was in a place where there were no other people there from the Middle East. When she first got there, some of her family members came and it was fine. When they left, she just couldn’t cope.

Cooper: What country?

Sax: She’s from Saudi. She went to school in Arkansas. You can’t imagine. It was so isolating. She heard about our program and wanted to come here. She’s already gotten connected with the Saudi community here. I got her connected with Nora. She already feels like she’s coming to a place where people will support her. That’s really huge when you’re leaving your family so far away. So the idea of bringing a cohort would make a big difference.

We also went to the international education conference here in San Diego, and met some folks who are the middlemen and bring a lot of students over. We made a good connection with them, and they’re very interested in the program. The guy who runs that has a son with a disability. Actually, both the people we met from the organization have kids with disabilities.

In fact, within a few days they called me and told me of a student who might be interested and I said, “Have the student call me.”

Martirosyan: What about the difficulty level of being accepted into San Diego—

Sax: If you’re international, if you’re out-of-state, it’s much easier to get in. And they will work with me on that. That’s no problem. As an undergrad, they’re getting 50,000 to 60,000 applications for around 9,000 slots. But if the student is international, especially at the graduate level, we have a little more control.

Bandak: Do you know if they offer scholarships for students to come?

Sax: They’re paying for students to come to our program. We’ve had other students from the Middle East, and they all got funded by their governments.

Bandak: Like Nora, the Ministry of Education is paying for her to study here.

Sax: And the new student who’s transferring from Arkansas, they’re paying for her, too. But the one who graduated a few years ago—they wouldn’t even let her stay to do the program. Our 60-unit program usually takes two-and-a-half or three years, but she was required to do it in two years, because they only wanted to give her funding for two years, and it’s difficult to do this program in that short a time. Nora isn’t being required to do that, so I don’t know if that changed. We write a lot of letters to do all this stuff to support the students.

Bandak: In the Arab world, the Qatar Foundation is all about education, and Caren’s program is educating people about assistive technology. They should include this in their education, because they’re trying to address people with disabilities. If you look at the Qatar Foundation, you’ll see. They could include assistive technology education.

I want to facilitate their stay here. When I went two years ago to Abu Dhabi to speak at the university, I met with a lot of girls who are interested in my program. The thing is that their families wouldn’t send them here, because they’re all covered, and they’re very strict. But if we had housing for them—

Cooper: —their parents might feel more at ease.

Bandak: Yes. They could feel easier about sending their girls. When we went to the presentation by the Gulf countries at this international education conference, and they were reporting on some surveys that they had done with students and what areas they did well in, where they were struggling, not academically but socially, what kind of support they got, what kind of supports they sought out, it was very interesting.

There was a lot of information that ultimately wasn’t terribly different from what we see for all students going away to college for the first time, when they’re not home with Mom doing everything. And that’s not so very different from a lot of freshman. You know how—when they send foreign students here—there are families who host them? Arab families will host. That can be arranged. That would make everybody feel so much better.

sdsu.edu


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Excerpts from the Jennifer Esposito Issue Aug/Sep 2014:

Lily Bandak — A Clear Focus

China — A Life of Nuclear Proportions

3D — Printing with Purpose

Jennifer Esposito — #Celiac

EARN — Defining Disability

Special Olympics — Health Training

Articles in the Jennifer Esposito Issue; Senator Harkin — Freedom to Choose; Ashley Fiolek — Marvelous; Humor — Hieroglyphics, Algebra & Philosophy; Geri Jewell — Prescribing LOL; Brandon — Stutter: My Change Agent; Travel — Destinations for All; China — A Life of Nuclear Proportions; Long Haul Paul — MotoMedicine; Lily Bandak — A Clear Focus; 3D — Printing with Purpose; Special Olympics — Health Training; Crisis, Conflict... — Bangladesh Excerpt; Jennifer Esposito — #Celiac; Audio Description — Joel Snyder, PhD; EARN — Defining Disability; ABILITY's Crossword Puzzle; Events and Conferences... subscribe

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ABILITY Jobs Lily Bandak and San Diego State University professor Caren Sax Free Digitial and PDF of Loni Anderson Issue