and advocate, Lily Bandak, and her colleague, San Diego State University
professor and administrator Caren Sax, recently spoke with ABILITYs
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-70s, 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 thats when
I started doing work with all these countries.
Cooper: What was the state of your Multiple Sclerosis (MS) at that
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 dont know if you heard about the massacre at Sabra and Shatila?
Bandak: In 1982, there was a big massacre in those areas, where they
killed every man, woman, and child. And I covered it. Thats
when I got sick. Thats when the MS started. My nerves just couldnt
take it. Im 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 dont
you come to Jordan? Heres my card. If you want to come, just
call the palace.
Cooper: The words every photographer loves to hear
Bandak: Yes. What inspired me to call was the fact that I was sitting
in Arafats 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 didnt
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 didnt
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 didnt
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 dont 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 didnt 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.
Thats 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. Its been a few years since Ive worked,
and I need somebody to sponsor my trip.
Lia Martirosyan: You were a great networker.
Bandak: I always had help. I dont 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 gohave you heard of Hariri in Lebanon?
He was the Prime Minister back then. His people arranged for me to
go and meet with his sisterwho was a member of the parliamentas
well as his wife. I asked if I could take photographs. They looked
down at me, because Im in a wheelchair and didnt 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 oclock when I was sleeping,
I got a phone call. The Prime Ministers sister said she couldnt
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
dont 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 werent alone
in the sense that over 50 percent of people with MS have clinical
depression as a symptom.
Bandak: Yes. Fortunately it doesnt 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 Alzheimers. She
cant even recognize her kids sometimes. It gets me very depressed.
Im trying so hard to do my work, and I really need help to get
this project going. Ive 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: Thats good. Please tell us more about your assistive
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 Id 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, shes had challenges.
First of all, she has a disability, so she brought a caregiver with
her, and the caregiver didnt 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 theyre going to have a hard
time. This is a different country. They dont know how to get
back and forth to their classes. They dont have anybody to help
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, thats 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? Its the biggest Arab-American organization.
Its 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
Bandak: Clovis was the Arab League ambassador for 15 years. Hes
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. Ive
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 isnt 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. Ive been in touch
with the American University in Beirut. Its 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 Delawares computer department has an assistive technology
component that addresses disability. The University of Delaware is
working on robotics. I dont expect that in the Arab world, but
anything simple to help them would be an improvement. But the AUB
wasnt 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, its not just computer access; its environmental
controls. Its a lot of things. In the Arab world, people who
are disabled would like to be able to control their TV. Itd
be great if you cant 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. Im 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. Thats pretty far for me to go. Like, my senator
in Delaware was Joe Biden. He did so much for me. Im 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 youve already had a student out
Bandak: Weve had more than one student from the Middle East.
We had that one girl who came from Saudi Arabia sponsored by the prince,
and theres another girl from Iraq. Shes studying to get
her masters. 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?
Cooper: And shes also in the assistive technology program?
Bandak: Shes 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 masters.
Cooper: Your concept includes housing the students, are you looking
at getting an apartment building?
Bandak: It doesnt 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. Shes from Iraq and works for me. Youve
been to Jordan? To Petra?
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 couldnt
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 didnt see many people in wheelchairs
in the streets 20 years ago. Maybe now, I dont 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 didnt bring the kids because they were too ashamed
to show them. You know?
But through assistive technology, the kids are able to do things.
Theyre able to go to school and learn, to be regular people
in society. The reason their parents were ashamed of them was because
they couldnt do anything. But I think assistive technology can
help them do a lot.
Cooper: We met the person from Al Jazeeras 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 70s.
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. Thats 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
Cooper: Youve 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, Dont 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. Theyre looking
forward to coming out.
Sax: I met with them when I was in Washington, DC in April. Thats
what they talked about.
Cooper: Do you have a lab set up?
Sax: No, theres 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 whove come from the Middle East thus far.
Sax: We have a new one coming this fall. Weve 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 well
come in and do this for you. Thats 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. Shes 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. Its
much easier to effect change if youve 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. Weve all been involved in change efforts,
and change comes slowly. In the Middle East, theyve 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: Thats 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 shes doing great.
Shes got a disability herself, so she knows. Shes had
treatment, knows how people get treated and is very interested.
The student coming in this fall started at another university. Its
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
Cooper: What country?
Sax: Shes from Saudi. She went to school in Arkansas. You cant
imagine. It was so isolating. She heard about our program and wanted
to come here. Shes already gotten connected with the Saudi community
here. I got her connected with Nora. She already feels like shes
coming to a place where people will support her. Thats really
huge when youre 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 theyre
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 youre international, if youre out-of-state, its
much easier to get in. And they will work with me on that. Thats
no problem. As an undergrad, theyre 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: Theyre paying for students to come to our program. Weve
had other students from the Middle East, and they all got funded by
Bandak: Like Nora, the Ministry of Education is paying for her to
Sax: And the new student whos transferring from Arkansas, theyre
paying for her, too. But the one who graduated a few years agothey
wouldnt 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 its difficult to do this program in that
short a time. Nora isnt being required to do that, so I dont
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,
program is educating people about assistive technology. They should
include this in their education, because theyre trying to address
people with disabilities. If you look at the Qatar Foundation, youll
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 wouldnt
send them here, because theyre all covered, and theyre
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
There was a lot of information that ultimately wasnt terribly
different from what we see for all students going away to college
for the first time, when theyre not home with Mom doing everything.
And thats not so very different from a lot of freshman. You
know howwhen they send foreign students herethere are
families who host them? Arab families will host. That can be arranged.
That would make everybody feel so much better.
You can read
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