June 02, 2005

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

Ilene Zeitzer interviews Judy Heumann, World Bank Advisor on Disability & Development in a piece that was originally published in, "Change from Within: International Overview of the Impact of Disabled Politicians and Disability Policy Bodies on Governance". The interview was part of the final report of the International Disability Exchnages and Studies (IDEAS) Project for the New Millennium, 199-2004 and was a joint project carried out by the World Institute on Disability (WID) and Rehabilitation International (RI).

Ilene Zeitzer is President of Disability Policy Solutions

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.


Ilene Zeitzer is President of Disability Policy Solutions
Disability Policy Solutions
1438 T. Street N.W.
Washington, DC 20009-3906
U.S.A.
Tel: 202 319 9199
Fax: 202 319 9299

Posted by rollingrains at June 2, 2005 07:28 AM