International Institute for Disability Advocacy: Interview

Q. Disability World asked me to do this series of interviews because it's actually pretty unusual for young Americans to work in international disability efforts. The fact is that all three of the 2004 Paul Hearne awardees are very involved in international work. Why did you create your own organizations, why did you feel that you couldn't work through existing organizations?

A. Well, I guess that question realistically might have a couple of answers. First, when I was finishing my undergrad degree, I wanted to take on an endeavor that would be something that I could continue as I started medical school. Also after having traveled and seeing the need for a program such as the International Institute for Disability Advocacy (IIDA), I guess a little bit of it was probably just being young and ignorant, honestly. And saying that, "I want to start my own thing." As I started to think about the IIDA and as I and the people who are running it now started to take a look at the way we wanted to run things, the more we learned about what was already out there. But at the time we started it, we really didn't know that there are all these different organizations, such as the World Institute on Disability and Rehabilitation International and all these other large, well-run organizations. And so we had kind of gotten our feet wet in it before we realized what was out there. That might not be the ...answer you're looking for, but it's the truth.

Q. Well, the truth is always best. Tell us about your organization and what led you to start it? You've explained that you didn't realize that there were other organizations out there, but they may or may not have been the proper venue anyway.

A. Exactly. That being said, I think that once we did find out what was going on we were very careful to make sure that we weren't reinventing the wheel. I think that what we are trying to do is a really unique and powerful idea. The goal and mission of the organization is to provide undergraduate scholarships to students with disabilities from developing nations, or less developed areas of the world. We started the organization at the University of Arizona, to bring students there for an undergrad degree of their own choosing. They get to pick their major, as long as it does somehow fit into an advocacy plan and how they best see that they can make an impact in their own nation. It could be architecture, or it could be journalism, or it could be political science.

Disability history classes

And then at the same time as they're getting their undergraduate degree they're going through what we call an Advocacy Training Institute. That's a program comprised of different special classes and also internships and leadership experiences that will really prime them to understand the history of the disability movement here in the U.S. and how this can be applied to their own areas of the world or their own nation. So, it's kind of a dual-fold plan to empower students with both an education and the ability to speak up for themselves. To be confident advocates and leaders within their own nations, based on the fact that they will be the most culturally sensitive and prepared to tackle the biggest problems in their own countries. So rather than us going in and saying that we're going to help individuals with disabilities within this nation, instead, we are recruiting leaders within that nation and then sending them back. Hopefully in that way, we will create a cadre of leaders that can form a nexus at the University of Arizona. People can come and learn from each other and go back and start to spread those ideas around the world.

Interest in developing countries

Q. And how did you get interested in developing countries?

A. Well, I started out at the U. of A. as a molecular biology major taking science classes, and over time, it simply developed as a natural interest. I started learning and reading more about it and wanted to just learn more and read more the further I went. Then I started to travel a bit, just became really interested in what was going on around the world. I met a really great advisor at school who was always challenging me and who helped open my eyes to what was going on around the world. After I finished all my sciences classes, I took a lot of electives on international development. In retrospect, I probably should have just majored in that.

Q. What countries did you visit once you became interested in the developing countries?

A. Well, I'd still like to visit more, of course, and the wheels and cranks are turning to see how I can get back out there right now. I think about half of Europe, South America, Argentina, with side trips to Peru and Brazil, Uruguay, and then some areas of Asia - Korea and Japan.

Sources of funding

Q. And where does your organization get its funding?

A. We're just getting off the ground. For right now, the program is bringing students over from the University of Sonora in Hermosillo, Mexico. That was a really good place for us to start because the University of Arizona already had an exchange program running, so we can bring over students with disabilities and not have to pay out of country tuition for those students. Instead, because that exchange has already been set up, the Mexican students with disabilities can pay their home school tuition and come to the U. of A. That's been a really good approach for us to start because we haven't had to have a lot of funding to do that. So far we've just applied for mini-grants and those kinds of things.

Q. To the University itself or outside?

A. Outside, and the University is also supplying some waivers and different things to provide in-kind support.

Collaboration with Disability Resource Center

Q. Describe how you're working with these students and how that intersects with the University itself. Does your organization have status with the University per se?

A. Yes, well we've decided to stay separate from the University so we're not an office within it, but we fully utilize the Disability Resource Center (DRC) at the U. of Arizona, which is pretty cutting edge. Being an undergrad there myself, I realized that their advisors are really an excellent resource for us. So we get to use their academic advisors and our students can be a part of the adaptive sports programs that the DRC runs. They do internships with people at the DRC; for example, the physical therapists and the people who have a wheelchair repair shop there, so those are actually a couple of the internships that are part of the Advocacy Training Institute. It's a pretty comfortable relationship because the DRC has always kind of seen its audience and its target group as both the community and students at the University. The other thing is now that we've gotten that program kind of up and running a little bit with the minimal funding that we have, we're applying for some larger funding. Right now we're mostly a grant program with USAID. That's going really well.

Q. So you're applying for a grant or you have a grant?

A. Applying for. We actually put in a proposal for it last year and were turned down, with the promise that if we made specific changes that they were requesting that we probably would be able to be funded this year.

Q. And what happens, for example, if the University gets a foreign student who has a disability? Would they think automatically to refer that student to you?

A. Oh yeah. Well, anyone who goes to the Disability Resource Center will automatically be funneled to us as a possible student if they want to take part in the IIDA. As it as now, there's probably between five and ten international students at the University with disabilities. We don't have the large-scale funding to pay their tuition yet. Most of them are very active in what we're doing and they're volunteers for us. I think those are some of the students that are currently doing that Advocacy Training Institute.

Q. Do you have a Web site?

A. Yes, it's www.iida.us.

Q. You basically have said that you got interested in developing countries and you decided to start this organization, somewhat in ignorance of other organizations that were doing perhaps the same kind of work, although I actually don't think so.

A. Definitely, I think as we found out what was out there, we said, "What do we need to know?" We decided we would redefine our goals and our mission according to what was already happening, but it turned out we didn't need to at all. There's a lot of collaboration and partnerships that can happen, but no one is really doing this type of program.

Current obstacles

Q. And what were your obstacles? What are your current obstacles?

A. Right now our largest obstacle is that I and two other people are directing this and we see the huge potential that the IIDA holds. There are so many people who really love the idea, who are really supportive of what we're doing. I'm sure there are many sources of funding out there for projects like this, especially if we were interested in working in the Middle East or other areas that are the focus of government funding right now. I think our biggest obstacle is time, in that we're all students, and none of us is able to say that we're going to take this on as a full-time commitment. That's what's most frustrating about it because we see that potential, it's right in front of us. At the same time, we're obviously always studying and doing other things that prevent us from applying to all these larger sources of funding right now. I mean, that could definitely change. We keep plugging away at it as much as possible, but that's our biggest obstacle.

Q. Does the University give you any kind of administrative help other than the kind of referrals and things that we've already talked about?

A. We have one lady who's kind of an assistant, an employee of the Disability Resource Center, who helps us out with some of the logistics, but definitely not a full-time administrative assistant. Actually for this USAID proposal she's helping us out a lot because the U. of A. would be one of the direct applicants, in that the USAID call for proposals is for universities. So, IIDA is running this program on behalf of the U. of A. The first goal is for money that we can get to allow us to hire someone -- that would be a really big step to help us to grow a lot faster.

Envisioning the future

Q. How do you see this organization in five years? What do you foresee for it? Do you see it being incorporated in some larger national, or even international, organization?

A. I think one of our main goals is to keep it as its own entity, and not to have it be within the bureaucracy of some other organization, especially the University or the government. We really want to maintain our own identity, and to continue to grow and to take on projects as we can. Once we get this project in Hermosillo really running and well-oiled, then to expand possibly to either other universities in Mexico or else to another country. It's really worked well for us to have a partner university. We might find a partner university in other areas of the world where they utilize the resources that are already there and incorporate people with disabilities into what's happening there and include them in the exchange.

Q. You're a medical student now, are you not? How does this all fit with that?

A. Good question! You know, that's one of the reasons that the IIDA is not leaping forward, by leaps and bounds on a daily basis. I think that's what I meant when I said that we see the potential but right now -- the other two directors are also Masters students-- we know we can't really drive forward to tap the full potential at this time. That's exactly why, because med school is pretty much a full-time commitment. And it's not something I'm willing to give up. I would love to say that I would be able to just run the IIDA and that was my job. There are some programs out there that pay people to start an NGO, like Echoing Green. I know there are some other foundations that pay about $40,000 a year so that you can make yourself an employee and get your NGO off the ground. And I would love that, but at the same time I'm not ready to give up this opportunity that I have where having gotten into med school, I have the potential to be an MD, so that is the main thing in my life right now. I mean, it takes over. It's pretty much a full-time job.

Q. Well, it may be a good thing. You're learning as you're doing.

A. Exactly, if nothing else it's been an incredible experience in learning how the nonprofit world works, how to apply for grants and about different funding organizations. I just think, we have our little program clicking right along and we're happy with that and we know that as long as we can keep that going, then we have a lot of opportunity to grow it into the future.

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