Interview with Judith Heumann, Advisor on Disability and Development at the World Bank
By Jennifer Geagan, World Institute on Disability (Jennifer@wid.org)
Judith Heumann was appointed as the World Bank's first full-time Advisor on Disability and Development in July 2002. Ms. Heumann was an Assistant Secretary of Education in the U.S. Department of Education during the Clinton Administration, in charge of the Office of Special Education and Rehabilitative Services. She is also a co-founder of the World Institute on Disability. I interviewed Ms. Heumann on a cold winter afternoon at her home in Washington in late December 2002 about her new role at the Bank, her experiences and impressions of disability in developing countries and recent international disability activities and initiatives. The interview began with the World Bank's recent Conference on Disability and Development.
JG: The World Bank recently held its first international Conference on Disability and Development. What do you think this conference accomplished?
JH: I think the Seminar on Disability and Development at the World Bank accomplished a number of things. One was it brought a large number of disabled people to the Bank. People were there for 2-3 days, and it was the first time that employees at the Bank had ever seen so many disabled people who were clearly activists from their countries, leaders in their countries, so I think that really helped to begin to plant a seed in the minds of some of the people at the Bank that this population of people can be an active participatory population like others. The seminar also illustrated that the issues disabled people are presenting are similar to those faced by indigenous populations, women and other poor populations living in developing countries. And it also gave the Bank leadership an opportunity to listen and to express their concerns and thoughts about the integration of disability concerns into the Banks poverty eradication agenda.
We had about 25 kiosks and a lot of other information that was being displayed, so that enabled people who didn't necessarily come in to listen to the presentations to meet people and to see some of the materials that were there, and there were some decent materials available. The Bank itself sponsored about six or seven similar activities in different countries, so this Seminar on Disability and Development also was an opportunity for other countries to invite the nongovernmental organizations from their communities and to talk with them about the work that they are doing and the work that the Bank is doing. I've been involved since June, trying to ratchet up the Bank's knowledge on this subject matter or at least to get more Bank staff members to see that disability isn't an issue to only be dealt with by others.
The Bank is now looking more closely at its primary areas of responsibility, refocusing on these and reducing deviation into other areas, if these are not the primary objectives or capabilities of the Bank. So, part of what came out of these days was a vision of how disability fits into the agenda of the Bank, which I think is very important.
Can the Bank make a difference?
JG: I have a follow-up question. Do you think expectations about the Bank's involvement in the disability community have been raised too high? Can the Bank really make a difference for disabled children and adults in poor countries, for example, in the area of education?
JH: I would certainly hope that if there's one area the Bank can make a difference in, it's in the area of education, because the Bank is putting a lot of focus on education under the Millennium Development Goals; one of the Millennium Development Goals is "education for all," meaning five years of primary school for each child by the year 2015. We can see how far behind some countries are that a five year universal education program would be considered success, whereas for the United States, Europe, Canada, Japan and other developed countries, certainly by the year 2015, the goals are probably going to encompass completion of many more years of education. So, yes, I think the Bank can make a difference here, and I think we're seeing some changes underway in the interaction between the Bank and governments in some countries, such as Vietnam, China, Brazil, that are specifically asking questions and using some of their money for projects such as data collection.
Another one of the critical issues that we're looking at in the Bank is helping to educate governments about achieving the Millennium Goals by 2015, with a view towards including the population of disabled children. We are encouraging governments to do that; we have information; we can help you. But additionally, it has to come from the disability NGOs, the nongovernmental organizations too. They need to raise the issue of education as being a critical issue. Here, I have some concern also, because education is something that the disability community around the world has not focused that much attention on. I think in many ways, this is because many people have become disabled later in life, after they finished school or after they finished primary school or secondary school, so they haven't really made it an important issue.
So, I think that in order for the Millennium Development Goal in education to become a reality in the area of disability, we need three things: the Bank needs to increase its capability and capacity to be able to provide appropriate technical assistance to governments; governments have to be willing to include disabled children as a part of their targeted group; and the NGO community of disabled individuals needs to become more knowledgeable about the issue of education and more involved in working with governments and other organizations that focus on education.
Investment of World Bank in disability
JG: Rumors abound that you have no budget and that your salary is the Bank's only real investment so far in disability. Can you enlighten us about what your job at the Bank actually entails and if you have or expect to have resources to address the issues that you raise?
JH: OK, first of all, right now what we have in our office is my salary is covered as are three other salaries, so there are four of us. Two people work for me as personal assistants, a special assistant working, because I have a disability, and I'm in a wheelchair, and I need assistance. One of the people travels with me as well as works with me in the office, and the other person works primarily in the office, also assisting me in doing work. The fourth person is doing substantive-- well, they're all doing substantive work, but she's doing management of a couple of our projects.
We have a Norwegian Disability Trust Fund grant, and we have what's called a President's Contingency Grant, which is dealing with children and youth. I believe what's important for people to understand is at no time will I have a budget which will allow organizations to apply to my office for money. That's not the way the Bank works. We will be able to expand our funding by getting pretty much either consultancy money from other governments or trust money from other governments, which is the way the Bank operates. The Bank gets money from donor countries, and some of that money is used throughout the Bank by offices like mine and many others. We apply for that money, like we did for the Norwegian Disability Trust. The Norwegian Disability Trust Fund can be used by Bank employees to do a number of things relating specifically to disability, integrating disability into project work that they're doing. We can use our money for project support like household surveys in developing countries and for country studies in developing countries, and we have a small amount of money for Bank staff to attend international meetings that are focusing on a disability issue related to their work.
The President's Children and Youth Funds are short-term dollars, and there the money is committed. We had applications that came in from developing countries working in conjunction with the Bank to apply to on children and youth issues, and then we also are going to be holding a conference on education sometime in the next six to seven months, which will be using some of the dollars that I described. So, the Bank is increasing its commitment, but we're also working on getting the offices throughout the Bank, like the regions and networks throughout the Bank, to use some of their funds in the area of disability, and I think that's slowly receiving more attention. Some of the regions have already been doing some work in the area of disability. The Eastern European Region, has been doing work on, for example, de-institutionalization, and there are a number of other countries that have been doing work, particularly post-conflict countries, but there is definitely a need for further funding for our office, for the Disability Advisor's Office, and for other parts of the Bank to be able to do a more effective job in this area.
But I think what's important for people to understand is the Bank isn't a foundation. Countries do have something called social or community monies-- some countries. Some countries have taken a portion of their loan money and put them into grants. So in these particular countries, if the country has done that, then an NGO in the country can apply for grant money. The country has usually set up an administering organization who handles applications, so one thing that is very important is that people who are interested in learning more about the Bank can come visit the website: www.worldbank.org to look at a particular country and get a lot of information including whether or not the country has taken any of their money and is using it for grants which local organizations could apply for.
Situation of disabled people in developing countries
JG: The next question is about your experiences in poor and developing countries. We know that over the years, you have traveled internationally to expand the Independent Living Movement and build bridges between the US disability community and disability rights groups in other countries, but presumably you have only just begun to explore the situation of disabled children and adults in countries that are recipients of development aid. Could you tell us about some of your impressions?
JH: Disabled people throughout the world, whether they're in poor countries or rich countries, have typically been at the bottom of the ladder as far as governmental public policy is concerned or distribution of dollars, and in very poor countries, it frequently means that there is basically nothing that people are receiving as far as a right to an education, consideration by governments to construct buildings accessibly or streets accessibly or attention to people who have emotional disabilities or sensory disabilities. So, in poor countries you find that very, very little has been done to directly benefit disabled people. Compared to developed countries, for many people the quality of life is at a survival level. So the poorer the country, the worse the situation for disabled people. The poorer the country, the more frequently you see government changes, lack of social and political stability and an increase in disability because of poverty and conflict.
One of the reasons why it's so very important the disability community itself has a stronger influence, which is in part what I hope to encourage through this job, is to encourage the development of local disabled controlled organizations. Of course, since the creation of Disabled People's International, the World Blind Union, the World Federation of the Deaf and other similar groups, we've seen the emergence of disabled run organizations throughout the world, but not enough, not sufficiently funded, not sufficient in numbers. I think parent organizations also are very few and far between, and I think in order for governments to pay attention and for donors to pay attention to the problems, we have to also help create an organizational structure where people at the local level can be really fighting for the inclusion of their issues into the infrastructure development and budgets of countries.
I think one of the other very critical issues is that the degree of stigma facing disabled people in some poor countries is just something that is difficult for many of us to really understand. I think we have all faced stigma in our countries, but the stigma in some countries is such that not only is the disabled person stigmatized, but the family is stigmatized, to the point where people are denied all opportunities. And these things aren't going to change overnight. So, I think it's very important that we continue to support those disability groups that exist already in civil society, that we really as an international community also speak more openly about the issue of stigma, and that we begin to pay a lot more attention to the removal of stigma, including that directed towards disability and disabled people.
JG: We know you recently visited The Philippines. DisabilityWorld readers have been learning about The Philippines this last year through the articles of Michelle Favis, a Fullbright Scholar from the US. Could you tell us your impressions of the situation of disabled Filipinos and what their priorities for assistance are?
JH: Actually, I was in The Philippines for five days. Three days was for an Asian Development Bank meeting, so I actually only visited programs and talked to people for two days. So, what I am going to say is not based on an exhaustive amount of experience, but what I did see was what I was saying earlier, that disabled people in the Philippines fare more poorly than other populations in the country. I visited a program that is run by Venus Ilagen who is now the president of Disabled Peoples International. Her organization has focused on education particularly for young children, preschool programs, although her program is serving many more children who are being denied education in the country. Whereas I think her program should not probably be serving kids more than seven at the most, there are eleven and twelve year olds being served in the program. Unfortunately, this is necessary, because otherwise these kids wouldn't be receiving anything.
The Philippines is structurally-- and I was only in Manila-- more accessible in certain ways than in Hanoi. In Hanoi, they had no ramps on the streets. In the Philippines, they did have ramps on some of the streets, so it was easier for me to get across some of the streets. In Hanoi you couldn't get up a curb, because they were much too big. In my short visit, I witnessed an important disability movement going on in the Philippines. I think Venus is very well connected, very knowledgeable about who the leadership is and works very well with the leadership. I introduced her to people at the Bank, and actually one of the people from the Bank came and visited the program that she was running. So I think the government of The Philippines has not really raised the disability issues very much in the loans that it has been dealing with the Bank. So the this underlines the example I was giving before of how important it is for the disabled organizations in a particular country to work with their governments to try to get them to include disability more in its development planning and budget.
Mexico's move towards a UN Convention
JG: We were impressed to see the main forward motion towards a UN Disability Convention emanating from Mexico, a country that has not been known for its progressive disability policies. We know you have some familiarity with the Mexican disability community and wonder if you could comment on how this came about?
JH: Well, I think actually in Mexico since 1994-1995, disability has slowly been getting more attention, first by the Zedillo Administration and now the Fox Administration. The Fox Administration, I think, has moved things further forward, because he's brought disabled people into the core of the government- at least a few disabled people. I think if you look at the Fox Administration and you look at the Clinton Administration, I don't think they've brought disabled people into leadership positions across agencies, which is what the Clinton Administration had done, but it's a more recent approach in Mexico.
I think the leadership came about because of people working for the President who were also in contact with people from other countries and were learning that there was a push for a convention, and I think they saw this as a way of doing a number of things. One, to demonstrate that Mexico is concerned about human rights, including those of disabled people; two, taking the lead on an international level through the UN clearly was a very powerful statement to be making as far as taking a leadership role of Mexico is concerned; and, three, I think they also understand what a good convention could mean for disabled people in mid-level and poorer countries.
JG: Will the Bank take a position on the proposed UN Disability Convention?
JH: I went to the last meeting that the UN had on the convention representing the Bank. I don't know, because I'm still too new, I honestly don't know whether the Bank even takes pro or con positions on conventions. I think typically what happens is that we will provide technical assistance to member countries on questions around the convention. And so we will stay involved in the work that UN is going to be doing on the convention, and I'll be able to figure more of this out over the next couple of months.
JG: What is the Bank's relationship to the UN?
JH: The Bank is a part of the UN family group and participates with the other UN organizations like the ILO, UNICEF, UNESCO, etc. It's part of the Bretton Woods family which came about in 1944, so people at the UN were happy when we attended that last meeting, when the Bank had presence at the last meeting, so we will continue to participate as time permits.
Progress in Asia Pacific region?
JG: We know you also recently visited Japan for a series of meetings affecting the Asia Pacific region, home to the majority of the world's disabled people. We know something about the NGO conferences that were held there by DPI and RI but have heard very little about the UN/ESCAP meeting that followed. We know one of the purposes was to launch the 2nd Asia Pacific Decade of Disabled Persons and wonder if you could comment about the ESCAP meeting and models of collaboration in that region?
JH: I thought the ESCAP meeting was a good meeting. They had representatives from many governments, not necessarily high level representatives, but representatives none the less, and I think it speaks to a number of things. One, ten years ago I don't think they could have pulled off a meeting like they did. Yutaka Takamine who works for UN/ESCAP and is Japanese and has been with ESCAP, I think, for ten or twelve years, I think has done a very good job at working with both NGOs and working with governments to get the issue of disability raised more effectively. Many countries now have signed on to doing more, agreeing to do more, in the area of disability in that region. But not all countries, and as I think that everybody knows, signing onto something is certainly important but doesn't mean that you're actually going to do anything.
So, I think it was an important first step to do the Decade. I think they accomplished some of their objectives during the Decade. I think you can see that over the last ten years there are many more organizations that are being run by disabled people in the region. There is much greater visibility of the issues, but in saying that, it's a very, very populous area, where the disability community is still having a limited influence at this point, but the Japanese, I think, are doing a good job in playing a leadership role in trying to help move an agenda forward in the region, so I was glad that I went to that meeting. It was beneficial for me to meet people. The Minister for Martyrs and Disabled in Afghanistan was there with his deputy, so I got to spend some time with them. I spent time with people from India and Laos. Laos is doing some interesting work in the area of education for disabled children, so I would say it was a productive meeting with a lot, lot more to do.
Disability & development: where's the disconnect?
JG: Looking back over three years of reports featured in Disability World, we can discern certain international assistance patterns. In general, we can see that most wealthy European countries have around twenty years experience in trying to support disability development projects in Africa and Asia and to a lesser extent in Eastern and Central Europe.
We can see that in Asia, the wealthiest countries there also have a lot of experience in sponsoring exchange programs, leadership development and other technical assistance projects to benefit people with disabilities in the poor countries of that region. Canada also seems to have a history in supporting disability groups in developing countries, with a special focus on the Caribbean.
Yet in the US, although there is sporadic support for specific international events like the Paralympics or Special Olympics and USAID has generously supported disability prevention campaigns, Vitamin A or polio, for example, there does not seem to be this same tradition of supporting disability development projects. Do you agree? If so, what can be done to stimulate this sort of interest in development projects here? If not, what patterns have you observed?
JH: The analogy I that I gave earlier is the same for the United States as it is for Vietnam or for Laos or for Uganda. The disability community in this country should be working towards exercising more influence over what the US government is doing with its international aid package. I know that there are a handful of people (including myself before I came to the Bank) and people who work at the World Institute on Disability, and a handful of other organizations who've been trying to influence how US foreign aid is distributed with very limited success. That's really what has to happen.
I think the issues are the same: the US government, like the Bank, like other donor agencies, still focus their attention more on prevention, and there's nothing wrong with focusing attention on prevention. I mean, I think that's one of the issues that talking both to people at the Bank and other places, that I come in and say, look, I'm certainly not saying that we want to continue to have bad water or landmines or war or malnourished children, so we are very much talking about-- what we want to do is remove the causes of disability. I think that is one of the critical issues we are trying to raise with people. We're not saying we want to do away with disabled people, because disabled people are here to stay. We're a part of life. People will always become disabled for various reasons, but we do want to remove causes of disability.
Now, one focus that would be important for the US, is for more people, and more governmental agencies to recognize that what it does in country, e.g., having policies inclusive of the education of disabled children, new construction being accessible, public transport being accessible, etc. isn't something that should just be available here in the United States, but our money should be used to help ensure the same level of opportunity for disabled people in other countries. This could have a huge impact-for the US to lead the way in requiring that its internal or domestic policies that are "disability friendly" be replicated in other countries through its aid dollars.
I really think the only way this is going to happen in a meaningful way is if the US organizations begin prioritizing international issues. As a rule, the US and its organizations, whether they're disabled or nondisabled organizations dealing with disability or not, don't pay much attention to international issues. So as a country, we need to be focusing more attention on what our foreign aid is doing, and in focusing more on what our foreign aid is doing, we also have to make the point that its pretty much an embarrassment that the US is doing so little to advance the human and civil rights of disabled people in a proactive way.
Getting beyond prevention
There are other countries, as you were saying, the Scandinavian countries, the Canadians, the Japanese, who have been doing more work in the area of disability beyond prevention, but even in saying that, those countries are-- disabled people in these countries feel that they need to be doing more. But certainly the Japanese, the Canadians, the Scandinavians are doing much more in the broad area of disability and development work than the US is doing.
I think to boil all this down, we're dealing with people, no matter what institution it is, whether it's the World Bank or the Asian Development Bank, the International Development Bank, or the Scandinavian country donors, whoever it is, who fundamentally do not believe that it is worth the money, because there has been such a limited exposure. People don't really understand-- not only who the disability population is, but what the population is capable of doing, and I believe that one of the reasons why there's such a focus on prevention, with limited attention paid to assistance for people who are already living with disabilities, is because they've had so few examples of what to do. I mean, most people don't know what to do.
What I have been experiencing at the Bank, when I was visiting in Manila and Vietnam, for example, and I meet with staff across the Bank, and I'm going to be going to India at the end of January, is not that people aren't interested, but they don't know what to do. So, show me where I can get information to give to people on effective programs in the area of education in countries around the world, and that's one of the things I'm now having to focus on is good examples of work that are going on in education and housing and health care and AIDs prevention, whatever the particular issue is, not just from a first world country perspective, although first world country perspectives are in some cases something we're going to have to live with, because there is so little work going on in other areas.
Need to do a lot more, a lot quicker
But for me, what my reference point is, what I remember is where we were in the US when I was young. We had no laws aimed at bringing disabled children or adults into the mainstream of society. We had massive discrimination, many people in institutions. We have always obviously had more money than many other countries have had, but in spite of that, it wasn't until 1975 that we finally had a law that said all children had a right to an education, that the one million children documented as being out of school had a right and the state governments had a legal responsibility to get kids into school. That happened between 1973 and 1975. So, I always put that in perspective and say we have to do a lot more a lot quicker, because people throughout the world shouldn't have to wait.
And I think one of the other very critical issues is at the Bank, my vision is for the Bank itself to be hiring people who are knowledgeable about disability issues, especially, of course disabled individuals. So, for example, in one of the regions, the East Asia region, the vice president is now talking about bringing a person on for a couple of years who can help them look at integrating disability into their work, so that's great. I mean we've been working with them for a short period of time. Other regions in the Bank are now setting up work groups of employees who work in the particular region. What we're suggesting is look at what you're doing right now in the area of disability, know what you're doing, talk to the NGOs within the countries, have a better understanding of what the needs are, and look at what you can be doing more that fits into the scope of work that the Bank is doing.
We're also looking at issues like construction, so I had a meeting last week with one of the people at the Bank who is handling construction, and we've realized there are no international standards on construction that take accessibility on board. So, now we're looking at convening a group of people who could work with us to help get a better understanding of what the state of the art is internationally in the area of school construction, for example, or new construction in general and what the Bank, and other development organizations, need to be doing to ensure that as new buildings are being built, as sidewalks are being built, as the transit systems are coming into place, that we look at construction which is accessible, streets which are accessible, transit systems which are accessible.
Bank needs information on effective disability work in poor countries
But I think really one of the big issues I have to right now underscore a lot is, and what I would like this article to partly focus on is, if people could send me information at my email address firstname.lastname@example.org of good or promising programs in developing countries that are focusing on community organizing, that are focusing on education, employment, transportation, health care, prevention of HIV/AIDS, any one of a number of issues, but if you could send me a couple of paragraphs which would let me know where the organization is, what the problem is, what people are doing to work on the problem, how long the work has been going on, and who is a contact person. That would be very helpful to me. Thank you.
JG: Thank you very much for your time.