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Interview: Judy Heumann, World Bank Advisor on Disability & Development

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  • Nilesh Singit
    Interview: Judy Heumann, World Bank Advisor on Disability & Development Interviewed by Ilene Zeitzer Q. What do you feel is the impact you have had as a person
    Message 1 of 2 , May 28, 2005
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      Interview: Judy Heumann, World Bank Advisor on Disability & Development
      Interviewed by Ilene Zeitzer
       
      Q. What do you feel is the impact you have had as a person with a disability on the governance process, using your experience at the Department of Education and now at the World Bank?
       
      A. It is very clear that, like in gender, where women, just by their presence, played an influential role in changing policies and practices and the views of governance components of organizations and the day-to-day operations of organizations, the same is true in the area of disability. So even if you don't have a job which specifically focuses on disability, as I have always had, there still is an effect that is gained by having disabled people working in any sector, whether it's public or private. However, it's also true, I assume, that in the early days as women began to move into positions of responsibility but were clearly still in a minority, they had to be constantly aware that they were breaking new ground, were under extra layers of scrutiny as representatives of their "group" or minority...
       
      I continually have felt that there is a major difference in being based in a large institution like a government department or the World Bank family, as opposed to being in a community-based, disabled-run organization, because in both these jobs there hasn't been a day that goes by where I'm not reminded of the fact that in addition to whatever my workload is, I'm also trying to deal with in a broad, comprehensive way, the inclusion of disabled people into the work of the federal government, into the work of the international community.
       
      Can I go across the street?
       
      I have to make the observation that even in 2004, people are still at a very baseline level of knowledge about disability.
       
      Today someone called me about a meeting that was being set up, and there are going to be a number of people from the Bank invited to this meeting. The person who called me said, "Can you come to the main building?" For a second I thought, "I think this woman is here in DC and I think the main building is across the street and I go there all the time." And I said, "What building are you talking about?" And she said, "The MC building." The MC building is diagonal to my office. So I said, "I go there all the time." But I use this as an indicator of how people's lack of exposure to those of us who have disabilities is so significant that people are still continually thinking that they have to compensate, to come to me because I can't go across the street, when in fact in my motorized wheel chair, except for steps, I can go any place that anybody else can go and I can go faster than they can go. But they don't see that.
       
      So here I am trying to look at developing intricate policies and budget issues, etc. and they're still trying to figure out can I go across the street?
       
      And this is perhaps where the gender parallel differs to a significant degree. Because people's views of what women may be able to do or what they should be doing is or was certainly not the same as what many believe or believed men could do, but it was never at the level of, "Can you come across the street?" And this is true whether someone is blind or deaf or if they have a cognitive disability. People don't distinguish among disabled people who might have difficulty getting across the street from those who can accomplish that easily. For instance, if I had a manual wheelchair which I couldn't push myself, if someone asked me, "Can you get across the street?" I would think, "Oh, they're observant, they noticed that I can't push my chair well." But this person has seen me zoom around. And this is not an exception. When I first came here and I was going around and meeting with the senior leadership of the Bank, going to their offices, in the beginning, the schedulers would say, "So-and-so will come to your office." I realized, having worked in the federal government and understanding pecking orders, that vice presidents don't come to advisers, advisers go to vice presidents. Once in a while, a vice president may want to kind of slum it and come around to offices, but as a rule that's not what they do. So I finally just had to say to my staff, "I will not have them come to my office, period. They need to see that I can get to their offices."
       

      The constant challenge of low expectations
      It takes time. This awkwardness and level of low expectations existed at the U.S. Department of Education too-especially where people hadn't worked with a disabled person, or they hadn't worked with a disabled person at an equal level. I was at a senior staff meeting at Education once, it was the first couple of months I was there, and one of the senior staff was saying, "Give me some information on a particular potential political problem." And he/she said, "And if we don't do this, we'll be cut off at the knees." And I said, "And then you'll send them to me for services," because I administered the rehabilitation office. One person who had a hidden disability laughed but the person chairing the meeting said, very embarrassed, "I'm sorry. We're still learning the appropriate language." And I literally put my hands like a time-out and I said, "I was joking!"
       
      But I say this in relation to governance issues because we fail to realize that we have an urgency to make changes and we have to figure out how we also begin to allow people to feel comfortable not only with those of us who are their colleagues (and comfort is maybe the wrong word but there is a truth about the issue of comfort - also with gay issues and others) but also for people to really be able to see that you have the same goals and aspirations as they do, and the groups that we're working with or for have the same types of barriers and opportunities as others. And I think that's one of the biggest challenges. I was at Education for seven and a half years and it took a while before people outside of my office really accepted me for who I was, and could listen to what I had to say in an equal way and agree or disagree based on the substance of the discussion, and not based on their feelings about how what they said or did would affect me.
       
      Necessity of investing time to gain trust and position of equality
       
      Q. Do you think that they actually held back because they were afraid of how you would react?
       
      A. They might have, or they were more negative. Another thing that I experienced when I was first at the Department was everybody at my level of job was in part brought in because they were an advocate, they were a civil rights advocate or a union advocate, a women's advocate, they were proactively working on a position which the administration agreed with and felt that they represented an important constituency and they wanted them to be a part of the team. Early on, within the first six months I believe, the Department of Education was holding satellite meetings with the Secretary once a month at the Chamber of Commerce. I didn't go to the first meeting; I went to the second one. When I got there, I had no idea that the place wasn't accessible from the front entrance, so I had to go in through the kitchen, and I was mortified. So at our senior staff meeting the next week, I said that I didn't think it was acceptable for us to be holding our meetings at the Chamber because it's not accessible, and there was not a lot of support for my position. I guess because we were given the facilities for free.
       
      They did eventually put a ramp in the front so that we were able to come in the front door, but the story is as follows. A couple of weeks later there was a piece in The Washington Post about a group of disabled people that I didn't know and still don't know, who had a demonstration outside of the Chamber of Commerce protesting the lack of accessibility. And I was called in by the Chief of Staff to ask me if I'd seen this piece, which I had. Gradually I realized during the course of the discussion that he thought that I knew these people and that I had put them up to demonstrating outside the Chamber of Commerce. And I remember that I realized that he was not presenting me with information, just pointing out, "Isn't this interesting?" but not directly suggesting to me that I was responsible for this. I said to him that I had no idea who these people were. I said, "I didn't know anything about this until today, I think it's great that they did it, but I don't who they are." And I made some kind of a comment that I hoped that he got rid of any preconceived notions of what I did or didn't do. There was this sort of litmus test that I felt in the beginning. But then over time it went away and people got to know one another and realized everyone was on the same team.
       
      So governance for people who are coming in on a new issue, like disability, is difficult because you have many, many issues that you have to address at the same time--only one of which is the substance of the particular issue. Equally important is really allowing people time and space to accept you and to be willing to respect you as an equal person. Once they do, then they can hear the issues you are raising more appropriately. But if they don't, then they frequently will think that there's an ulterior motive behind what you're saying. So, the more disabled people, the more women, gays/lesbians, whatever the particular group is, can come in to work in whatever the entity is, the more people will see 1) that everybody is different, 2) that we can have a particular objective in relationship to the way we believe policies and practices should be occurring. But they also can begin to realize that they don't have to be afraid of us for what we stand for and that we can be challenged like other people and our ideas aren't necessarily good or bad, they're not good because we are whatever we are; they're not bad because we are whatever we are. And I think that's a very critical issue.
       
      Even in rich countries, what we already know isn't always applied
       
      Moving our issue away from being a marginalized issue is very difficult, and one of the big problems I think also is particularly in addressing a new issue, which disability is - even in developed countries, it's still a relatively new issue. So even as you begin to get people to agree that what is happening is wrong, then they want to know how to fix it and in too many cases we don't have a quick answer. We do in things like accessibility, but not in every aspect. In developed countries, the answer is yes, we know what to do. But even when we know what to do, it's not always done.
       
      For example, a staff member just came back from a meeting of the Bank in Paris and they had a meeting not in the Bank building but in a brand new French building that wasn't accessible throughout the building. We had disabled people going to the meeting and when they went and did a review of the building, they had to build ramps in parts of the building for the person in a wheelchair who needed to have access to different floors. So you can't even take for granted that in new construction in wealthy countries --things that we have known how to do for decades --are actually being done right. Or the statement that is still made the world over: "We don't need to put a ramp into the school because there are no disabled people who go there."
       
      But I think what's also important about whatever particular group today disabled people are moving in is that we can then get other people who may be affected by disability or not to argue our points, and I think that's also where we gain legitimacy. When the women's issue is argued not just by women, when the disability issue is argued not just by disabled people, then I think we begin to see these issues become more mainstream.
       
      Ultimately, most issues can benefit from a disability lens
       
      Q. Do you see people looking to you for advice, both in this job at the World Bank and when you were at Education, on issues that go beyond the issue of disability per se?
       
      A. I don't exactly know how to answer that because in part what we've been saying here is every issue should be perceived of as benefiting from a disability lens. In the end we may not prioritize that we can do everything, but any office in the Bank should ask if disability is a component of the work we could be doing here.
       
      For example, I met with the infrastructure people. There are a series of issues they are working on. Maybe one of the issues they were working on didn't really deal with the issue of disability, building dams or something like that, but of the six issues, five are related [to disability]. Then the question is can you do all five at once? So one of the things we talked about is, all five could benefit, but let's start with one or two things so that people begin to get a better understanding of what we mean when we say to include a disability lens, so that people can begin to learn by experience what to do. So, yes things are slowly but really happening here.
       
      I'll give you an example. Today I went to hear a presidential lecture, for HIV/AIDS day and a staff person from Ethiopia came up to me and said, "I want you to know that at the meeting this morning with the regional vice presidents the issue of HIV/AIDS and disability was raised." I was very excited because I wasn't at the meeting. So that means that the person from Ethiopia who was there at the meeting had conveyed the message that in Ethiopia the intersection of HIV/AIDS and disability is important. There's funding going to it and they wanted acknowledgment of it. So I'm seeing that in numbers of places.
      Yesterday I was at another meeting where they were laying out the agenda and somebody said, "Where's disability?" and I almost fell out of my chair. So I'm actually pleasantly surprised, given the few disabled people who are here at the Bank, that disability is not always being looked at only because of our instigation.
       
      We're getting more and more phone calls, you know, "There's a transport meeting going on, could we participate in the meeting?" There's a "this" meeting going on, could we participate? -- things that we didn't know about. Now there are plenty of other things here we should be invited to or included in, but we're not. None the less, it is getting better, the message is getting through. I really don't want to exaggerate it, but I do want to say that people are slowly recognizing that this is a credible, intersectoral issue.
       
      Continual education on disability issues paying off
       
      Doing all this education about disability is starting to pay off in a number of ways. There's a disabled women's reproductive health project going on in India, supported by a Bank grant applied for through the usual channels. Someone I know just came back from Hanoi, reporting to a conference that they are tearing up the streets and adding curb cuts. I was there a year ago and there were no curb cuts.. Now what was good about that is that I've been saying in the Bank, if we're concerned about economics, we have to be concerned about spending money wrong. Whether it's our money, or a donor's money, or even the government's money, we need to be saying that building streets inaccessibly is not only wrong, but it's going to cost money and as disability groups become more powerful, like in Hanoi, they are going to require that money be spent on retro-fitting.
       
      There is a push now on to recruit disabled professionals into the Bank. They're bringing a consultant on to actually look at what to do in order to do that. The president is really pushing that whole issue with junior professionals and volunteers on up the ladder. If we had 50 (or even 10 or 20) disabled people working at the Bank who were not only disabled but also understood the bigger picture, it would make a real difference. What I say to people at the Bank is that we're looking for people who are knowledgeable about disability in whatever the particular area is that we're hiring. Yes, we would like to bring disabled people in. We also want to bring non-disabled people in who understand the substance of the issue. But it is really important, when you sit down at tables, to have people who can say how disability fits into a particular issue. So, on the staff survey this time there are questions on disability, the questions are not good, but the questions are there. There is still too much medical stuff that goes on here. Disability is too focused in the health unit still, but nonetheless it's improving.
       
      The Department of Education did these 3-day seminar series in three or four cities every year on education. In the beginning, it was just being done on the Title 1 education laws, which didn't include disabled people. We started by saying we would like to be included. What happened over the 8 years of the Clinton administration is that disability became completely mainstreamed because we devoted a staff person to work on the issue, we got our regional technical assistance centers involved and they took on a big responsibility.
       
      So what happened is we had parents with disabilities that came to the workshops, we had academics and teachers and others who came. We didn't just do disability lectures or workshops, we did disability integrated into regular activities. I hear those aren't happening anymore, though.
       
      I believe what's very important in all of this, is that we have to have a very strong disability movement at the national level, at the provincial level, and the county and city levels, or village levels, because it is that healthy tension which exists between the community and the public and private sectors which really can help advance an issue. It has to be that the entity believes that if it doesn't include disability, something negative will happen. Whether they think it's a big or little thing, is an issue. But once you get inside, it's also then to be able to really show how this can be mainstreamed. And in a case of development or working in the government, it's to really show how the organization cannot achieve its identified objective. So in the case of any of the UN families, the Millennium development goals will not be achieved if disability isn't effectively mainstreamed. Now at the moment we are absolutely not effectively mainstreamed. And we have until 2015 for this to happen. So my assumption would be that at some point, people will begin to realize that this is an issue.
       
      New Bank report on lack of disabled children in school
       
      In the Education sector of the Bank they've developed a document which says that basically of the 105 or 115 million children not in school, 30-40 million of them are disabled. That's a very big deal, that the Bank is willing to say that this is a problem, and if it is not addressed, then they are not doing their job. This makes it easier for us now to be working with this office , brainstorming and looking at projects to develop and getting some funding to be able to move some of the research forward in the country on local levels. At the same time, it now becomes easier to give legitimacy to the disability organizations at the international and national levels that are working on this issue. Now in saying that, it will take years to make real progress and it will never happen if the driving force is not also at the local level. So the question is how to ensure that this happens, how do we transfer this driving force to the local levels.
       
      What I found at Education was that the more I could get the Secretary and the Assistant Secretary to meet with disabled people, to visit programs that included disabled people or parents, the more they began to see how this was a part of their work. But again, it's not like one discussion or one visit will do the job. If you have somebody on your staff who continually works on the issue, like when I worked at the Department, I had two people on my staff that I consciously brought in because they came from minority communities.
       
      That was my commitment to myself that in my special staff, I would bring people in who represented racially diverse communities. Because I knew that with the best of intentions, if I didn't have people that would continue to come to me and say, "What about this? You didn't do that," I would make mistakes. And it wasn't that I was consciously not remembering things, but I couldn't remember it all or I couldn't do it all. So that's again why I think, looking at the issue of diversity, from a disability perspective, cuts across so many slices. And we have to be able to bring in all these different levels and help educate all of us, not only about disability but the substance of the topic and what we have to learn and how to encourage people to put money into things when they are given 10 problems, and we can only deal with three of them, why should we be dealing with disability. And to try to get them to see that this too is a mainstream issue.
      View of disability a cultural issue?
       
      Q. What is the Bank's response when people/governments say that not accepting people with disabilities is a cultural issue?
       
      A. That's exactly one of the points that I think is very important. You have to, in my view, do a number of things. You have to have people at the local level who can say, "This isn't true" or even it is true, "This is not the right approach, and therefore we have to work for change." And again, looking at gender as an example, historically girls didn't go to school. Why did girls need an education? Then you began to have girls go to school and you began to get this data showing the importance of girls going to school and all the other indicators that changed as a result of girls going to school. So, here it's to be able to say, "Yes, in point of fact today there may be parents who don't want to send their kids to school because they have a disability and they don't want their children to be mocked and there may be kids who are doing that." And there may be parents who don't want disabled children in the school, but do we really believe that's the right policy and what should we be doing to address it? So it is true in many of the countries that we deal with, there is a friction around it. But on the other hand, it's also a fact that that friction has existed everywhere, on multiple topics, and you just have to move forward.
       
      Collecting hard information
       
      So, I think it's learning by doing and working to learn about, collect hard information about examples of places where things have been done differently. In the development context, sometimes it's showing examples from more developed countries. In India, when I was there earlier this year, they had some wonderful projects. Every country now has great disability groups and when you sit down and talk with those groups and you get the Bank or government to sit down and talk, they're the ones that have to push the agenda forward. We didn't have a law in this country that said you couldn't discriminate in the area of education until 30 years ago so it's not that we're this great role model. We're a much newer country and we don't have all the history of religious discrimination, etc. I personally believe that in African countries where disabled people are becoming a part of the entire governing structure, that if they stay on target with the democratization that's going on, disabled people will proportionately do better in those countries, quicker, then we have in our country because our barriers, while no longer being legal, are so very pervasive.
       
      New African models intriguing
       
      For example, the new African models that say disabled people have to be involved in every point of influence is so not true in this country, so that you can see the difficulty in influencing day to day activities. Here, there aren't many disabled people on city councils, there aren't many disabled people on county boards, there aren't many disabled people that are on committees and commissions, there aren't many disabled people in state legislatures, in the federal government. The few that are there, they can't just be arguing disability. They aren't there just to do that. They're there to govern, and only one component of what they are doing is disability, or gender, or whatever else. But when there are so few people, that's part of the problem. I mean, I've never spoken to U.S. Congressman Langevin about these issues, but I'm sure when he first came to Congress he had to be dealing with some of the same issues.
       
      When I ran for city council in Berkley, I had a guy who was working with me on my campaign who told me that I needed to be careful about the way I went from the audience to present myself in front of the group to speak. I had to be careful about the way people saw me move. I'm sure the same was true with Langevin, too. You have to worry about so many things. Not just what you're saying, but how you look and how you are. It's the same thing for the first women that came in. But at the end of the day, the more people we have in every level of governance who have disabilities, not all who are going to agree on positions on issues, but the more it becomes a normal part, an everyday happening, then the more we can move on and deal with the real governance issues: budgets, policies, practices, etc..
       
      Engaging with the next generation
       
      I think it's very exciting to see what's going on with the UN Convention and all these different things, and I absolutely know that I'm going to die with the world being a better place than it was when I first had polio in the 1950s. But the reality is, in the richest country in the world, I'm still going to live in a society where most people's homes are not accessible, where in point of fact, while more people are beginning to understand disability, but as I go down the street everyday, parents will look at me and still say to their kids, be careful, watch out and try to pull their kids away from me. And I always talk to kids, because it embarrasses parents. They don't know what to do, because the kids will engage, most of them. And to me, getting the next generation to recognize that disability has to be integrated into what's happening is what is important.
       

       
       
       
       

       

      Thanking you,

      Yours truly,

      Nilesh Singit
      Co-ordinator West Zone
      Disability Rights Initiative
      India Centre For Human Rights & Law
      4th Floor CVOD Jain School
      84 Samuel Street, Pala Galli,
      Dongri, Bombay - 400 009
      Maharashtra, India,


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    • lm murray
      Nilesh, This is really interesting. Why are you so in the know? Louise Nilesh Singit wrote: BODY { FONT-SIZE: 14pt; MARGIN-LEFT:
      Message 2 of 2 , May 30, 2005
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        Nilesh,
         
        This is really interesting.  Why are you so in the know?
         
        Louise 

        Nilesh Singit <singitnilesh@...> wrote:
         
        Interview: Judy Heumann, World Bank Advisor on Disability & Development
        Interviewed by Ilene Zeitzer
         
        Q. What do you feel is the impact you have had as a person with a disability on the governance process, using your experience at the Department of Education and now at the World Bank?
         
        A. It is very clear that, like in gender, where women, just by their presence, played an influential role in changing policies and practices and the views of governance components of organizations and the day-to-day operations of organizations, the same is true in the area of disability. So even if you don't have a job which specifically focuses on disability, as I have always had, there still is an effect that is gained by having disabled people working in any sector, whether it's public or private. However, it's also true, I assume, that in the early days as women began to move into positions of responsibility but were clearly still in a minority, they had to be constantly aware that they were breaking new ground, were under extra layers of scrutiny as representatives of their "group" or minority...
         
        I continually have felt that there is a major difference in being based in a large institution like a government department or the World Bank family, as opposed to being in a community-based, disabled-run organization, because in both these jobs there hasn't been a day that goes by where I'm not reminded of the fact that in addition to whatever my workload is, I'm also trying to deal with in a broad, comprehensive way, the inclusion of disabled people into the work of the federal government, into the work of the international community.
         
        Can I go across the street?
         
        I have to make the observation that even in 2004, people are still at a very baseline level of knowledge about disability.
         
        Today someone called me about a meeting that was being set up, and there are going to be a number of people from the Bank invited to this meeting. The person who called me said, "Can you come to the main building?" For a second I thought, "I think this woman is here in DC and I think the main building is across the street and I go there all the time." And I said, "What building are you talking about?" And she said, "The MC building." The MC building is diagonal to my office. So I said, "I go there all the time." But I use this as an indicator of how people's lack of exposure to those of us who have disabilities is so significant that people are still continually thinking that they have to compensate, to come to me because I can't go across the street, when in fact in my motorized wheel chair, except for steps, I can go any place that anybody else can go and I can go faster than they can go. But they don't see that.
         
        So here I am trying to look at developing intricate policies and budget issues, etc. and they're still trying to figure out can I go across the street?
         
        And this is perhaps where the gender parallel differs to a significant degree. Because people's views of what women may be able to do or what they should be doing is or was certainly not the same as what many believe or believed men could do, but it was never at the level of, "Can you come across the street?" And this is true whether someone is blind or deaf or if they have a cognitive disability. People don't distinguish among disabled people who might have difficulty getting across the street from those who can accomplish that easily. For instance, if I had a manual wheelchair which I couldn't push myself, if someone asked me, "Can you get across the street?" I would think, "Oh, they're observant, they noticed that I can't push my chair well." But this person has seen me zoom around. And this is not an exception. When I first came here and I was going around and meeting with the senior leadership of the Bank, going to their offices, in the beginning, the schedulers would say, "So-and-so will come to your office." I realized, having worked in the federal government and understanding pecking orders, that vice presidents don't come to advisers, advisers go to vice presidents. Once in a while, a vice president may want to kind of slum it and come around to offices, but as a rule that's not what they do. So I finally just had to say to my staff, "I will not have them come to my office, period. They need to see that I can get to their offices."
         

        The constant challenge of low expectations
        It takes time. This awkwardness and level of low expectations existed at the U.S. Department of Education too-especially where people hadn't worked with a disabled person, or they hadn't worked with a disabled person at an equal level. I was at a senior staff meeting at Education once, it was the first couple of months I was there, and one of the senior staff was saying, "Give me some information on a particular potential political problem." And he/she said, "And if we don't do this, we'll be cut off at the knees." And I said, "And then you'll send them to me for services," because I administered the rehabilitation office. One person who had a hidden disability laughed but the person chairing the meeting said, very embarrassed, "I'm sorry. We're still learning the appropriate language." And I literally put my hands like a time-out and I said, "I was joking!"
         
        But I say this in relation to governance issues because we fail to realize that we have an urgency to make changes and we have to figure out how we also begin to allow people to feel comfortable not only with those of us who are their colleagues (and comfort is maybe the wrong word but there is a truth about the issue of comfort - also with gay issues and others) but also for people to really be able to see that you have the same goals and aspirations as they do, and the groups that we're working with or for have the same types of barriers and opportunities as others. And I think that's one of the biggest challenges. I was at Education for seven and a half years and it took a while before people outside of my office really accepted me for who I was, and could listen to what I had to say in an equal way and agree or disagree based on the substance of the discussion, and not based on their feelings about how what they said or did would affect me.
         
        Necessity of investing time to gain trust and position of equality
         
        Q. Do you think that they actually held back because they were afraid of how you would react?
         
        A. They might have, or they were more negative. Another thing that I experienced when I was first at the Department was everybody at my level of job was in part brought in because they were an advocate, they were a civil rights advocate or a union advocate, a women's advocate, they were proactively working on a position which the administration agreed with and felt that they represented an important constituency and they wanted them to be a part of the team. Early on, within the first six months I believe, the Department of Education was holding satellite meetings with the Secretary once a month at the Chamber of Commerce. I didn't go to the first meeting; I went to the second one. When I got there, I had no idea that the place wasn't accessible from the front entrance, so I had to go in through the kitchen, and I was mortified. So at our senior staff meeting the next week, I said that I didn't think it was acceptable for us to be holding our meetings at the Chamber because it's not accessible, and there was not a lot of support for my position. I guess because we were given the facilities for free.
         
        They did eventually put a ramp in the front so that we were able to come in the front door, but the story is as follows. A couple of weeks later there was a piece in The Washington Post about a group of disabled people that I didn't know and still don't know, who had a demonstration outside of the Chamber of Commerce protesting the lack of accessibility. And I was called in by the Chief of Staff to ask me if I'd seen this piece, which I had. Gradually I realized during the course of the discussion that he thought that I knew these people and that I had put them up to demonstrating outside the Chamber of Commerce. And I remember that I realized that he was not presenting me with information, just pointing out, "Isn't this interesting?" but not directly suggesting to me that I was responsible for this. I said to him that I had no idea who these people were. I said, "I didn't know anything about this until today, I think it's great that they did it, but I don't who they are." And I made some kind of a comment that I hoped that he got rid of any preconceived notions of what I did or didn't do. There was this sort of litmus test that I felt in the beginning. But then over time it went away and people got to know one another and realized everyone was on the same team.
         
        So governance for people who are coming in on a new issue, like disability, is difficult because you have many, many issues that you have to address at the same time--only one of which is the substance of the particular issue. Equally important is really allowing people time and space to accept you and to be willing to respect you as an equal person. Once they do, then they can hear the issues you are raising more appropriately. But if they don't, then they frequently will think that there's an ulterior motive behind what you're saying. So, the more disabled people, the more women, gays/lesbians, whatever the particular group is, can come in to work in whatever the entity is, the more people will see 1) that everybody is different, 2) that we can have a particular objective in relationship to the way we believe policies and practices should be occurring. But they also can begin to realize that they don't have to be afraid of us for what we stand for and that we can be challenged like other people and our ideas aren't necessarily good or bad, they're not good because we are whatever we are; they're not bad because we are whatever we are. And I think that's a very critical issue.
         
        Even in rich countries, what we already know isn't always applied
         
        Moving our issue away from being a marginalized issue is very difficult, and one of the big problems I think also is particularly in addressing a new issue, which disability is - even in developed countries, it's still a relatively new issue. So even as you begin to get people to agree that what is happening is wrong, then they want to know how to fix it and in too many cases we don't have a quick answer. We do in things like accessibility, but not in every aspect. In developed countries, the answer is yes, we know what to do. But even when we know what to do, it's not always done.
         
        For example, a staff member just came back from a meeting of the Bank in Paris and they had a meeting not in the Bank building but in a brand new French building that wasn't accessible throughout the building. We had disabled people going to the meeting and when they went and did a review of the building, they had to build ramps in parts of the building for the person in a wheelchair who needed to have access to different floors. So you can't even take for granted that in new construction in wealthy countries --things that we have known how to do for decades --are actually being done right. Or the statement that is still made the world over: "We don't need to put a ramp into the school because there are no disabled people who go there."
         
        But I think what's also important about whatever particular group today disabled people are moving in is that we can then get other people who may be affected by disability or not to argue our points, and I think that's also where we gain legitimacy. When the women's issue is argued not just by women, when the disability issue is argued not just by disabled people, then I think we begin to see these issues become more mainstream.
         
        Ultimately, most issues can benefit from a disability lens
         
        Q. Do you see people looking to you for advice, both in this job at the World Bank and when you were at Education, on issues that go beyond the issue of disability per se?
         
        A. I don't exactly know how to answer that because in part what we've been saying here is every issue should be perceived of as benefiting from a disability lens. In the end we may not prioritize that we can do everything, but any office in the Bank should ask if disability is a component of the work we could be doing here.
         
        For example, I met with the infrastructure people. There are a series of issues they are working on. Maybe one of the issues they were working on didn't really deal with the issue of disability, building dams or something like that, but of the six issues, five are related [to disability]. Then the question is can you do all five at once? So one of the things we talked about is, all five could benefit, but let's start with one or two things so that people begin to get a better understanding of what we mean when we say to include a disability lens, so that people can begin to learn by experience what to do. So, yes things are slowly but really happening here.
         
        I'll give you an example. Today I went to hear a presidential lecture, for HIV/AIDS day and a staff person from Ethiopia came up to me and said, "I want you to know that at the meeting this morning with the regional vice presidents the issue of HIV/AIDS and disability was raised." I was very excited because I wasn't at the meeting. So that means that the person from Ethiopia who was there at the meeting had conveyed the message that in Ethiopia the intersection of HIV/AIDS and disability is important. There's funding going to it and they wanted acknowledgment of it. So I'm seeing that in numbers of places.
        Yesterday I was at another meeting where they were laying out the agenda and somebody said, "Where's disability?" and I almost fell out of my chair. So I'm actually pleasantly surprised, given the few disabled people who are here at the Bank, that disability is not always being looked at only because of our instigation.
         
        We're getting more and more phone calls, you know, "There's a transport meeting going on, could we participate in the meeting?" There's a "this" meeting going on, could we participate? -- things that we didn't know about. Now there are plenty of other things here we should be invited to or included in, but we're not. None the less, it is getting better, the message is getting through. I really don't want to exaggerate it, but I do want to say that people are slowly recognizing that this is a credible, intersectoral issue.
         
        Continual education on disability issues paying off
         
        Doing all this education about disability is starting to pay off in a number of ways. There's a disabled women's reproductive health project going on in India, supported by a Bank grant applied for through the usual channels. Someone I know just came back from Hanoi, reporting to a conference that they are tearing up the streets and adding curb cuts. I was there a year ago and there were no curb cuts.. Now what was good about that is that I've been saying in the Bank, if we're concerned about economics, we have to be concerned about spending money wrong. Whether it's our money, or a donor's money, or even the government's money, we need to be saying that building streets inaccessibly is not only wrong, but it's going to cost money and as disability groups become more powerful, like in Hanoi, they are going to require that money be spent on retro-fitting.
         
        There is a push now on to recruit disabled professionals into the Bank. They're bringing a consultant on to actually look at what to do in order to do that. The president is really pushing that whole issue with junior professionals and volunteers on up the ladder. If we had 50 (or even 10 or 20) disabled people working at the Bank who were not only disabled but also understood the bigger picture, it would make a real difference. What I say to people at the Bank is that we're looking for people who are knowledgeable about disability in whatever the particular area is that we're hiring. Yes, we would like to bring disabled people in. We also want to bring non-disabled people in who understand the substance of the issue. But it is really important, when you sit down at tables, to have people who can say how disability fits into a particular issue. So, on the staff survey this time there are questions on disability, the questions are not good, but the questions are there. There is still too much medical stuff that goes on here. Disability is too focused in the health unit still, but nonetheless it's improving.
         
        The Department of Education did these 3-day seminar series in three or four cities every year on education. In the beginning, it was just being done on the Title 1 education laws, which didn't include disabled people. We started by saying we would like to be included. What happened over the 8 years of the Clinton administration is that disability became completely mainstreamed because we devoted a staff person to work on the issue, we got our regional technical assistance centers involved and they took on a big responsibility.
         
        So what happened is we had parents with disabilities that came to the workshops, we had academics and teachers and others who came. We didn't just do disability lectures or workshops, we did disability integrated into regular activities. I hear those aren't happening anymore, though.
         
        I believe what's very important in all of this, is that we have to have a very strong disability movement at the national level, at the provincial level, and the county and city levels, or village levels, because it is that healthy tension which exists between the community and the public and private sectors which really can help advance an issue. It has to be that the entity believes that if it doesn't include disability, something negative will happen. Whether they think it's a big or little thing, is an issue. But once you get inside, it's also then to be able to really show how this can be mainstreamed. And in a case of development or working in the government, it's to really show how the organization cannot achieve its identified objective. So in the case of any of the UN families, the Millennium development goals will not be achieved if disability isn't effectively mainstreamed. Now at the moment we are absolutely not effectively mainstreamed. And we have until 2015 for this to happen. So my assumption would be that at some point, people will begin to realize that this is an issue.
         
        New Bank report on lack of disabled children in school
         
        In the Education sector of the Bank they've developed a document which says that basically of the 105 or 115 million children not in school, 30-40 million of them are disabled. That's a very big deal, that the Bank is willing to say that this is a problem, and if it is not addressed, then they are not doing their job. This makes it easier for us now to be working with this office , brainstorming and looking at projects to develop and getting some funding to be able to move some of the research forward in the country on local levels. At the same time, it now becomes easier to give legitimacy to the disability organizations at the international and national levels that are working on this issue. Now in saying that, it will take years to make real progress and it will never happen if the driving force is not also at the local level. So the question is how to ensure that this happens, how do we transfer this driving force to the local levels.
         
        What I found at Education was that the more I could get the Secretary and the Assistant Secretary to meet with disabled people, to visit programs that included disabled people or parents, the more they began to see how this was a part of their work. But again, it's not like one discussion or one visit will do the job. If you have somebody on your staff who continually works on the issue, like when I worked at the Department, I had two people on my staff that I consciously brought in because they came from minority communities.
         
        That was my commitment to myself that in my special staff, I would bring people in who represented racially diverse communities. Because I knew that with the best of intentions, if I didn't have people that would continue to come to me and say, "What about this? You didn't do that," I would make mistakes. And it wasn't that I was consciously not remembering things, but I couldn't remember it all or I couldn't do it all. So that's again why I think, looking at the issue of diversity, from a disability perspective, cuts across so many slices. And we have to be able to bring in all these different levels and help educate all of us, not only about disability but the substance of the topic and what we have to learn and how to encourage people to put money into things when they are given 10 problems, and we can only deal with three of them, why should we be dealing with disability. And to try to get them to see that this too is a mainstream issue.
        View of disability a cultural issue?
         
        Q. What is the Bank's response when people/governments say that not accepting people with disabilities is a cultural issue?
         
        A. That's exactly one of the points that I think is very important. You have to, in my view, do a number of things. You have to have people at the local level who can say, "This isn't true" or even it is true, "This is not the right approach, and therefore we have to work for change." And again, looking at gender as an example, historically girls didn't go to school. Why did girls need an education? Then you began to have girls go to school and you began to get this data showing the importance of girls going to school and all the other indicators that changed as a result of girls going to school. So, here it's to be able to say, "Yes, in point of fact today there may be parents who don't want to send their kids to school because they have a disability and they don't want their children to be mocked and there may be kids who are doing that." And there may be parents who don't want disabled children in the school, but do we really believe that's the right policy and what should we be doing to address it? So it is true in many of the countries that we deal with, there is a friction around it. But on the other hand, it's also a fact that that friction has existed everywhere, on multiple topics, and you just have to move forward.
         
        Collecting hard information
         
        So, I think it's learning by doing and working to learn about, collect hard information about examples of places where things have been done differently. In the development context, sometimes it's showing examples from more developed countries. In India, when I was there earlier this year, they had some wonderful projects. Every country now has great disability groups and when you sit down and talk with those groups and you get the Bank or government to sit down and talk, they're the ones that have to push the agenda forward. We didn't have a law in this country that said you couldn't discriminate in the area of education until 30 years ago so it's not that we're this great role model. We're a much newer country and we don't have all the history of religious discrimination, etc. I personally believe that in African countries where disabled people are becoming a part of the entire governing structure, that if they stay on target with the democratization that's going on, disabled people will proportionately do better in those countries, quicker, then we have in our country because our barriers, while no longer being legal, are so very pervasive.
         
        New African models intriguing
         
        For example, the new African models that say disabled people have to be involved in every point of influence is so not true in this country, so that you can see the difficulty in influencing day to day activities. Here, there aren't many disabled people on city councils, there aren't many disabled people on county boards, there aren't many disabled people that are on committees and commissions, there aren't many disabled people in state legislatures, in the federal government. The few that are there, they can't just be arguing disability. They aren't there just to do that. They're there to govern, and only one component of what they are doing is disability, or gender, or whatever else. But when there are so few people, that's part of the problem. I mean, I've never spoken to U.S. Congressman Langevin about these issues, but I'm sure when he first came to Congress he had to be dealing with some of the same issues.
         
        When I ran for city council in Berkley, I had a guy who was working with me on my campaign who told me that I needed to be careful about the way I went from the audience to present myself in front of the group to speak. I had to be careful about the way people saw me move. I'm sure the same was true with Langevin, too. You have to worry about so many things. Not just what you're saying, but how you look and how you are. It's the same thing for the first women that came in. But at the end of the day, the more people we have in every level of governance who have disabilities, not all who are going to agree on positions on issues, but the more it becomes a normal part, an everyday happening, then the more we can move on and deal with the real governance issues: budgets, policies, practices, etc..
         
        Engaging with the next generation
         
        I think it's very exciting to see what's going on with the UN Convention and all these different things, and I absolutely know that I'm going to die with the world being a better place than it was when I first had polio in the 1950s. But the reality is, in the richest country in the world, I'm still going to live in a society where most people's homes are not accessible, where in point of fact, while more people are beginning to understand disability, but as I go down the street everyday, parents will look at me and still say to their kids, be careful, watch out and try to pull their kids away from me. And I always talk to kids, because it embarrasses parents. They don't know what to do, because the kids will engage, most of them. And to me, getting the next generation to recognize that disability has to be integrated into what's happening is what is important.
         

         
         
         
         

         

        Thanking you,

        Yours truly,

        Nilesh Singit
        Co-ordinator West Zone
        Disability Rights Initiative
        India Centre For Human Rights & Law
        4th Floor CVOD Jain School
        84 Samuel Street, Pala Galli,
        Dongri, Bombay - 400 009
        Maharashtra, India,


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