Interviews with Disability Leaders Elected or Appointed to Government Office

Interview with Moses Masemene, Minster of Justice (Lesotho)

Q. What do you think has been the impact of having a person like yourself in a high office? Do you feel you are advancing the agenda of people with disabilities?

A. I think the impact is that while representation is not as great -- there is only one in the Parliament now--whereas initially in 1983 it was about 150, nevertheless, I think the impact is that by lobbying, we were able to put forward amendments to incorporate disability issues in places like education, building control, sexual offenses, and criminal procedures legislation. Those amendments required efforts to convince MPs to do that. In the beginning, when I first came in 1993 it was like, "how did this blind man wind up in Parliament?" But with time, because I also became a force, I compelled them to dialogue, I engaged them in discussion, and the attitudes of MPs toward disability have been transformed.

As you know, MPs come and go, just like in offices of government, but when you transition to a new one it doesn't mean you are going to start all over again. So in the same manner, as new MPs came, they became like the old MPs because I have been sitting since 1993. So my presence became a way of sensitizing them. When you are disabled minister, it's more elevated because you are in the decision-making role on the issues of policy and legislation in disability policy, so you have more responsibility to the cause. I do think there's an impact but I think there's more to be done. The massive task is to ensure that the whole government integrates disability in all its activities. We also need to strengthen the movement itself so that we can also continue the lobbying because the role has changed. My role has changed, I'm sort of a nexus between the movement and Parliament/goverment. But as I said we need to keep up the movement and continue with lobbying because we need more voices dealing with these issues.

Q. Are there now currently other members of parliament with disabilities in Lesotho?

A. There's only one chief who got disabled in a car accident in his village. For the last Parliament he was at home. During this Parliament, I advised the Senate to facilitate his attendance so they built a ramp to the Senate house so he now attends as a chief. Furthermore, he is not in charge of disability questions, but he is disabled. So I think that had an impact on the Parliament because they had to make it accessible to him. They had to provide him a table so that he could write. With disability, social attitudes don't change fast but they do when it becomes necessary.

Q. Are there specific laws in your country with regard to disabled people?

A. As I indicated before, we are able to make an amendment to certain sections of laws, like building control laws, about accessibility. There are also laws regarding sexual offensives - for protection of disabled people from rape, etc. There are now laws like this.

Q. What about employment accommodations, etc.?

A. At the moment there are no labor laws per se, there's no law like this. But we want that policy for disability, also convention laws on disability. But we will have to wait years to accommodate disability. But I've been communicating with the ministers in force. They will support the laws when they come through my chamber - all the laws of government. So it can be an envious position. I can advise and even more so in my way, inform, mostly about disability legislation because most of them want to be informed and updated.

Q. What about access to education?

A. There is a provision for that, and there are amendments for that in government at the moment, I think for pre-primary to support disabled children. There's also a policy for free education. We also say that disabled people must be given the use of facilities and support services so that the education can be meaningful.

Q. Do children with disabilities go to regular schools?

A. For the blind, there are integrated schools and for other types of disabilities, they go to other schools. Only the deaf go to special schools.

Interview with Susan Chitimbe, Minster Responsible for Persons with Disabilities (Malawi)

Q. What do you think the impact has been of having yourself and other disabled individuals in high offices? Are there other people with disabilities in high offices in Malawi, and can you tell us about them and what do you feel the effect has been?

A. Indeed there is a high impact in having disabled people in high offices. I am one of them, I was appointed Minster Responsible for People with Disabilities in the President's Office. It really has an impact because when you're in government, the voices of the voiceless are heard. Unlike before where we were only advocating outside of government. But, the advocating and the lobbying which we did while I was out in the non-governmental organizations, I think helped us to be in government now. But because I am in government now, I understand the problems of disabled people out there in society and I take their concerns to government -- to the Parliament.

Parliament or the Cabinet endorses or approves what non-governmental disability organizations need. For example, the policy we have now is the policy that has been written by non-governmental organizations, typically organizations of people with disabilities, the civil society, and government officials. It's a policy that has an impact on all Malawians and you can see that as persons with a disability, we can manage to work hand and hand with others. And we also have disabled people who are in the commissions of government. We have a lady who is a commissioner in the national commission of women and she is also disabled. But we are fighting for more seats in positions of government. Nevertheless, things are working, even though we are not really many, but we know that the numbers will increase in due course.

Q. Can you give some specific examples of new policies that are in place because of this enlarged role of disabled people and the influence of Disabled Peoples Organizations (DPOs)?

A. What we can see now is that the policy for disabled individuals, which wasn't there before, has been worked on and people with disabilities are included and in every Ministry we are seeing that we have to mainstream disability issues. This has really helped, because if you are talking of education, you will find that persons now can talk of education for disabled people. And in health, it's the same. We are there in the system but what we are just working for now is the implementation. But the implementation is being taken on board because of this Ministry, the Ministry responsible for People with Disabilities, whereby the officers of my office are part of other committees in the other Ministries, so we are seeing that we are being included in each and every policy that we have in Malawi.

Q. Does your office have actual oversight of every other Ministry in terms of new policies, new initiatives, new programs, new construction? Do they have to run it by you, or do you rely on the fact that you have someone in those committees?

A. We really rely on the principal secretaries, because when we were having our policy, all the principal secretaries in government were invited to attend. The principal secretaries are the key officials of every Ministry. So they were brought on board and each and every principal secretary knows about disability issues, so when they are trying to work on a policy or any change in their Ministry, they are supposed to consider the perspective of disabled people.

Q. Do you actually monitor what they do or do you rely on their understanding and hopefully their agreement with this?

A. No, we actually check.

Q. So you have oversight?

A. We have oversight of whatever is happening. So either myself or the principal secretaries or other officials in the Ministry will be responsible.

Q. So what happens if you discover, for example, that in a different sector, let's say transportation, they are planning to, I'll give a made up example, they are redoing the airport but they haven't made it accessible, or they haven't thought about access enough, what would your Ministry do? Would you have the power to call it back, to say "what a minute, before you go any further you haven't thought about this or that?"

A. This is what we are fighting for and we are really doing that. We are supposed to monitor and see what is good for people with disabilities.

Q. Do you have your own budget- does your office have its own budget?

A. Yes, we have our own budget as a Ministry.

Q. Can we talk a little bit about employment? I know most developing countries have very high general unemployment. Are there specific initiatives that you are pushing from your office to create more jobs for disabled people?

A. We are really trying, but I think it is very, very difficult in Africa for most of the people with disabilities because most didn't go to school. So what we are trying to do is to create more businesses for disabled individuals or to create independent living through those small-scale businesses whereby they can be self-reliant. But it is very, very difficult for most of the people to go to work. There are others who have been to school and they are really working, but it is extremely difficult for us to create opportunities for work. Even non-disabled persons are missing out, they can't find work. So what we are trying to do is find out how we can involve disabled persons to be self-supporting, to make their living through small scale businesses or maybe bigger businesses, cooperatives, etc.

Q. How do you think that the other non-disabled governmental people react to you and your office? Do you think that they just pay sort of token respect or do they really understand? I'm sure there are some individuals you have won over and some that you haven't, but how do you think that they regard and your office?

A. Actually they respect me, they have the same respect as with any other Minister or any other person. They don't regard me because I'm disabled and think they can tease me or the like. I have been well received.

Q. And you feel that they don't just look at you and your office as important when it has to do with disability, but that it is across the board with everything?

A. That is right, because as a government Minister, I am a Minister for each and every one, but specifically for people with disabilities. They respect me as a figure of government who is trying to improve the lives of people with disabilities. That's what we are fighting for, we are there fighting for the Malawians, either non-disabled or disabled, but particularly for disabled persons because I'm in that office.

Q. And the office is at the presidential level, the same as it is in South Africa?

A. Yes, we report directly to the President.

Q. And do you think that that helps, rather than having you buried down in one particular Ministry, let's say health or social or education. Do you think it helps to be at the Presidential level?

A. It does but even the other Ministries actually report back to the President. We can't do anything without reporting to the President.

Q. You talked a little bit when we first started speaking about legislation or policies for disabled people. Can you tell me a little bit more about how that works? Do you go to a Member of Parliament and ask him to introduce legislation or do you have the right to suggest legislation?

A. What actually happens is that we work with NGOs. Now this policy came about because of the cry of disability NGOs, because we didn't have a policy, and it hasn't actually passed yet but it is about to pass. We went from the grassroots to the civil society with each and everyone else, so I think that's how we came up with this policy. We also work with the principal secretaries of all government Ministries, in that we have to scrutinize the policy just to see to it that it is fit for everyone who is disabled, or who is not disabled today, but might be disabled tomorrow, so it must be a policy for all people, for each and every one. So policy is initiated through NGOs, government, and the civil society to ensure that the rules to be put in place are good for people who are now disabled and [those] who might be disabled in the future.

Q. But the legislation legally, from a Parliamentary position, would need to be introduced by somebody. So how do you do that, do you get a champion or can you suggest it to a Ministry to introduce legislation?

A. We are working hand in hand with the Minister of Justice. He is the one who is going to introduce it.

Q. Do you think that there has been measurable progress? Do you see progress?

A. Yes, there is progress. I started when I was young as a disability activist, and then I was a Committee Member of different committees on disability issues, later on I was a Commissioner and now I am the Minister for People with Disabilities so we can see the fruits coming out of what we fought for and we know we have made progress and continue to progress.

Interview with Wilma Newhoudt-Druchen, MP (South Africa)

Q. What do you think has been the main impact of being a person with a disability in a high office? Do you feel that you are a token, do you feel that you are a voice crying in the wilderness some days? Do you feel that you are advancing the agenda for disabled people?

A. Well, first, I'm definitely not a token, and I can't be. Secondly, because of my language being a very visual language a lot of attention has been paid to that in Parliament alone and not just among staff of Parliament but the Members of Parliament themselves. For example, many of the black MPs -- because the black culture does not accept disabilities very easily -- when they go to their constituencies, they meet parents or other disabled people, and now they have become more aware. Some MPs didn't know that disabled people are entitled to a bond or that there are schools that take disabled people. So they will come to me and ask me questions. Before when I entered Parliament they would keep quiet, they didn't know how to approach me, but now MPs come up to me. Some of the MPs' family members are disabled and now they will come and tell me. They feel proud of the fact, they will say "Oh my brother's child is deaf or is blind or is disabled in some other way." And then they themselves, they say to me that "they would love to learn to speak sign language." They would come to me and ask me to learn certain signs and so they would become more aware of deaf issues and of sign language.

I myself am not really usually emotional, but I know sometimes in my speeches in Parliament I am emotional about disability issues because I'm there to articulate personally what being disabled is all about. I want to bring that across to the MPs and to make them aware. Many of the opposition party will come to me or see me and say thank you, you have educated us about not only your particular party but ours as well. Little things like that break down the barriers. But one problem is that the department must implement these things, and the departments are very slow. We constantly have to go to them and remind them and say, "Listen, you have to implement things for us -- we've got policy, we've got legislation." But the implementation is not happening, and we keep on going to Parliament and reprimanding the departments all the time. We say that we have to monitor the departments to see that they are implementing these policies that can change the lives of disabled people.

Q. Do you get to choose the Committees you are on? And if so, can you use some of the budget that the Committee has oversight on to direct more activities toward disabled people?

A. We can choose the Committees we want to sit on, but the political parties might also say that there are too many Members on the one Committee and they will then delegate another Committee to that Member. But you can choose your own interest. I'm an official member of the Committee on Communications. I'm also a member on a new Committee that was established in 1999 that is responsible for improvement of life and status of children, youth, and disabled persons. The Committee itself has a budget. We hold public hearings, we go on tours -- national tours, provincial tours, international tours. We have too many provinces to visit in one year, so we will pick one province where we need to go. But every department has a budget. We will go to each department and ask them for an annual report and we will want to see the budget, and we will look at the budget and see how many funds have been allocated for particular policies. And we can then ask, "What has been done?" And they will say, "Oh, we are not aware of disability issues." Or they will say they never asked for funds from the department of finance. So they can ask for this next year and we can come back to them. But it is actually like that.

Concerning the Committee budget, for example, if one of us wants to come to a conference like this (overseas), the Speaker of Parliament will have to approve that budget. Each member does not have his or her own budget. Parliament will be allocating funds to a Committee and that's the money you use. We also have constituent funds. When Parliament closes or is in recess, we get some funds to do constituency work in the community -- especially for your own area. So my money, my little money, must cover my car expenses, my accommodations, maybe transport and refreshments for people who come to the venue or the meeting. I believe that the deaf have no access to Parliament not even via the TV so what I do is I go out to the community, the deaf community, and bring Parliament to them. So my money, my constituent money is used for my meetings.

Q. So you're not nominated from your district, the party puts you on the list?

A. Either through your branch in your local area or through a person who has a very good relationship with the ANC. So the Disabled People of South Africa negotiate with the African National Congress (ANC) and people would like to nominate these five specific people to be on the party's list and the ANC agrees and says they will be part of the national list.

Q. Do you have a staff as a member of Parliament- a staff that works with you? Or is it just a committee staff for everyone to share?

A. I'm a normal MP, only recently I was promoted to a whip. A whip is basically, that you supervisor a certain number of interests. Normal MPs don't have their own staff, but a whip has a chief person. Whips share a secretary, so most of the time I do my own paperwork. I contact the deaf, I know the deaf community, I know the disabled community. If there's no interpreter, I will then go to this one secretary with whom I have a very good working relationship, and that's who I basically work with. We don't have our own staff. Maybe the chairperson of the Committee will have his own staff, and that would be a secretary and a researcher.

Q. Do you feel that there has been measurable progress in your country in the specific areas such as education, access to education, particularly for kids with disabilities? Are you things that you can cite that you feel have improved in recent years?

A. Yes. The ANC government didn't believe in mainstreaming and, I don't believe, are fully converted to mainstreaming yet. But they are aware that, the educational department is aware, that they cannot simply implement mainstreaming. For example, a deaf child going to a hearing school right now, there will not be any interpreters -- they will not get the assistance they need in a hearing school. There aren't interpreters in all classrooms, maybe not even one interpreter all day, so that is the question now. That is what we are working to find out, so we need to be realistic. In the past, in the schools for the disabled children, education was weak, it was totally incomplete. But it has improved up to now. It hasn't been 100 percent, but the education is improving in the schools for disabled children.

Recently, the deaf had a march to fight for sign language to be instituted in schools because the education department passed a new syllabus. For eight years sign language was supposed to be part of the syllabus but it was not. The Department of Education took note of that, so just recently they took up a task team to work this out and the deaf people of South Africa and the department of education are now looking at how sign language can be part of the curriculum. You must remember that the teachers right now in the schools for the deaf don't know sign language or only know a little. Do they understand bilingualism? Do they understand the whole purpose of bilingualism? They do not teach via sign language - do they know how to explain sign language as a language? Do they understand that? So they are discussing how they are going to do all these things. All this -- that all teachers must sign -- is supposed to be implemented before January 2004.

It is issues like this where you can see the progress. It is slow, but issues like that help to see that if the department heads are made aware then they will do something about it. The problem however is that South Africa is not like in America where there is a lot of research being done to decide why sign language is so important, and things like that. They also prove that South Africa's ways on doing things. They have never done research like that at universities. It's like the chicken or the egg type situation. Do we go in and teach sign language or do we do the research first? Which comes first? It's that type of situation. What works overseas, may not be the right solution for here. It's important that we find a South African solution.

My chairperson said, "Wilma, you came in. But you came in with a different view of communication." He said he never thought that deaf people communicated. But the way that deaf people communicate is also my work. The first time I went to an ANC policy conference, I thought I was going for the youth and the children and the disabled people, but when I came they said, "No, you're coming for communications." And they put forth a resolution that said within 3 years, the South African Broadcasting Corporation (SABC), our TV channels, must have captioning, sign language, and provisions for the blind. So the department has to implement the ANC resolution that became the policy for the department. So when the resolution was finished, we then went to a full amendment vote that said accordingly that the SABC must think of the needs of the deaf and the blind. This was the first time, it had never been in the vote before, with the disability people in the political mainstream. I don't know if I will be back next year or what because we have elections next year. But whatever happens, the SABC must implement that for the deaf. The SABC is quite sick of me, they don't like to see me when they come to meetings. But when it comes to access to information for us disabled people, the amendment is so important. I mean, that to me is something that has happened for us as disabled people. Yes, maybe right now you won't see things happening fast but the 10 of us who are in Parliament came in 1999. To expect implementation to occur so fast, well that costs money. But, the goal is that things must change, even if it's slowly.

Interview with Charlotte McClain Nhlapo, Commissioner in the South African Human Rights Commission

Q. What happens when you have an office at the higher level like you do in terms of the mechanism for setting disability policy?

A. I think I would preface anything by saying it's invaluable to have people with disabilities in any office - in our situation it was more about having people in the Office of Human Rights. When I came to the Human Rights Commission, there was a person with a disability who had been appointed through a process of disabled people putting his name forth and he then was the Commissioner on Disability Issues. I came in on the ticket of child rights but obviously even in relation to child rights the issues that were of concern to me were the issues relating to the rights of children with disabilities. And so for me it was very important to have somebody in my office who was responsible for disability issues and who was himself disabled, but also to be able to come into an office at that level on rights issues to be able to introduce the disability perspective to it. Times have changed, and I now am the Commissioner responsible for children as well as for disability issues.

Q. So that person has left?

A. That person has left. But again, I think it is so important to have a person who is disabled in a position like that and not have someone who is non-disabled talking about disability rights. I think what it has afforded really is that you have somebody there who can motivate for disability issues and make disability issues at the level of developing policy, a cross-cutting issue. And so that it doesn't remain something that's left out, because it will be left out. My experience has been that I constantly have to say, "what about disability, what about disability?" And that's beginning to change now, people are beginning to introduce disability almost automatically and I think it's because almost from the beginning of the Commission, we had somebody with a disability at that level of Commissioner.

So now it's standard practice when we do protocol within the Commission. We send out protocols to all the government Commissions to find out what progress is being made in terms of the rights that are contained in our Bill of Rights and we ask questions that are related to vulnerability and vulnerable groups. We always ask questions around disability. "What has the Department of Education done in terms of inclusive education? What are they doing for adult disabled learners?" So in terms of our monitoring of government's progressive realization of rights, the issue of disability appears. But I think again it goes back to the fact that we've constantly had somebody there to say, "let's look at disability rights issues." So within the Commission, the Commission has been fairly sensitized. A lot more could be done, but I think it's really a good thing to have.

What I am trying to do now is not be the only person that deals with disability, and so very often I will ask a colleague. Not too long ago there was a big conference on disability and the right to work and employment, and I particularly thought that it was not good for me to go to that. I asked one of my colleagues to do it because I want the other Commissioners also to get an understanding of the issues that we're dealing with, so that when they talk about equality they too can talk about disability and not necessarily have to have me there to do that. So, it's about mainstreaming but it's also about having the expertise that can then be shared and developed within the Commission. And then obviously with the greater work that we do which is partly to advise government on various policies and to monitor government, so the aspect of disability always comes up.

Q. Can you suggest to members of Parliament that certain policies are needed? Tell me about how you work with the legislative process.

A. One of our functions is particularly to advise government on legislation. That can be two-fold, it can be a more proactive role which would be to advise on the gaps that we see in the legislation or just the basic non-existence of legislation that we think is necessary. Or it could be a more reactive approach where bills have already gone through and then we're asked to comment on them. We're almost always asked to comment on bills. In fact we have a legislative monitor who sits in Parliament and informs the Commission on pieces of legislation that she thinks that we should be commenting on. So we can either do it proactively or reactively. So, definitely we can suggest legislation.

In relation to disability, we've looked at the Social Assistance Act which is being amended and there we've made comments and recommendations about issues we think are important in relation to disability, and we've done that with other pieces of legislation too. But again I think there's a lot more that the Commission could do in relation to advising government on legislative intent and on amendments. We've tended more to work around amendments and bills that have already gone through and to do less on proposed new pieces that we think are important. But also we may not do it formally in the sense that we may not actually send in a written bill, but we very often facilitate those kinds of discussions, and not related to disability, but say in relation to the right to food. We've been able to facilitate meetings where the issue comes up and it's because the Commission has felt that there was a gap. Plus in our monitoring process that we've developed, we make recommendations and very often in those recommendations, we'll make specific recommendations that relate to legislation. We may say for instance in relation to disability, there's lacking A, B, C, and D. And we often have inquiries, national inquiries. Last year in November we had an inquiry stroke research project that looked at a barrier-free society and we came up with a report that made specific recommendations in relation to looking at our building code and trying to harmonize that with our constitutional principles. So some work has been done in that regard.

Q. The legislative monitor mentioned - would that person's job be to look at all legislation irrespective of whether technically it relates to disability?

A. She looks at all legislation with a view to see how we can input into that legislation from a human rights perspective, and so it could be disability rights, could be children's rights, could be the rights of older persons.

Q. What about things like transportation. For example, if your Minister of Transportation was proposing new guidelines for trains?

A. Theoretically she should be doing that, but we've got one person in Parliament and we've got masses and masses of bills coming through, so we haven't been able to have that kind of eagle eye that we want to say, "what's happening in terms of transportation regarding disability." So those pieces of legislation probably have slipped by unless it's brought to our attention and then we look at making a submission specifically on that.

Q. How attuned are your Ministers in other Ministries to the issue of disability and to the issue of access and human rights from a universal perspective? Are they thinking about disability?

A. I think that they are, and I think a lot of it goes back to the fact that we now have the integrated disability strategy. And I think that strategy as the kind of overarching strategy for government almost necessitates that they begin to think that way. Thinking is one thing, implementing is another. And so if you looked at the various governmental policies, the issue of disability is often addressed in policy, in theory. In practice, it's been very different. The Commission has a component of legal services, and we are able to receive complaints from any legal entity and from the public on all issues related to our Constitutional mandate and so issues around disability would fall into that. But I must say, in that regard I have been disappointed because we have had very few complaints related to disability discrimination. I can understand why historically. I understand the fact that you are looking at a segment of society that has been excluded, has been by and large silenced, hasn't really had a voice, and therefore are not really aware of what is out there, even within the new dispensation. And so people don't use the systems that are in place.

Q. Do they know about it?

A. I think that's one problem. People don't know that the Commission exists, and if they do know that the Commission exists, they don't know how to access it. And to a large extent that is a fault that we should take responsibility for, because the Commission needs to be able to be out there, to be accessible. But obviously there are constraints and limitations as to what we can do. My concern is always around raising expectations and being out there, but not really doing it. So for me, I don't want to tread softly, but it has been a concern for me. I often feel that we don't use the kind of powers that we have as a Commission, but I also don't think that we're used to the best of our ability, and that's a concern.

Q. Can you take someone to court?

A. Yes, we can, we have those powers.

Q. Could you get a monetary settlement on behalf of a person?

A. No, we couldn't because that would be a civil settlement. But we could take punitive action. Having said that, we have taken no action. And again, I think a lot of it has to do with the fact that I was working on a case and because I saw it from a disability perspective, a disability rights perspective. I didn't see it as a social welfare issue, even though it was very much within that domain of health and social welfare. The situation was that I was told by a journalist that there was a young boy who was severely disabled as a result of a bad operation in one of our rural hospitals, and I found that it wasn't just one boy, but several young boys. I was outraged, and was told there was nothing they could do about it. I wrote endless letters to the Department of Health in the province asking what was going on, why there wasn't proper nutrition, occupational therapy, etc. And I was ignored, I was ignored by the MEC, who is basically the equivalent to the Minister in the province. So as a Commissioner, I have the power to subpoena, and I used those powers. So we subpoenaed the MEC to the Commission and she came with her lawyers and we developed a plan around this particular child, which included respite, nutritional packages, assistance from the state. So I think the Commission has made some strides. In terms of looking at children being discriminated from schools, we've been able to go in and with not too much hassle we've been able to talk to principals and say look, "They are different. You can be creative. All you need to do is bring the teacher downstairs." I think a lot of it has to do with being passionate about it, being aware of the issues. And quite frankly I don't think a non-disabled person could have been as committed to these issues.

Q. How many people do you have working at the Commission?

A. Our act allows for 11 Commissioners, we only have 5 at the moment and one part-time Commissioner and a secretariat which is our support made up of about 80 people and 5 offices in various provinces, and there we have a provincial officer, a legal officer and a educational officer. Each Commissioner is assigned a province, and because we only have 5 Commissioners, each one has 2 provinces. The Commission is a term of 7 years. The way Commissioners are appointed is that constituencies and various interest groups submit names to Parliament. Then there is a short list and interviews are conducted by multi-party meetings and then Parliament makes recommendations to the President who then makes the final appointment. And last year, the President only appointed 6 of the 11 people submitted, partly because of budgetary restraints.

Q. Do the Commissioners have specific groups they represent or is it all supposed to be crosscutting?

A. We have thematic portfolios. So thematically, I'm responsible for the rights of children, people with disabilities, and economic and social rights. We also have a Commissioner responsible for the rights of older persons, another responsible for the rights of prisoners, etc. We have a separate Commission called the Commission on Gender Equality, which is not part of our Commission, but that we work closely with.

Q. Do you know of other countries that have Human Rights Commissions like this?

A. Yes, in Africa there are a growing number of them. There's one in Malawi, Zambia, Kenya has just started one, Uganda has a very good one, and Ghana has an exceptionally good Commission. And there are a couple in North Africa. India has a very vibrant commission. They are gradually on the increase. At last count, I think there were 50 internationally.

Q. In the UK, as you may know, they have a Disability Rights Commission and there has been a big controversy as whether it should be folded into a larger Commission - such as the one on gender quality, etc. The debate is to whether it would weaken it (it's quite strong now) to be part of a large, overarching Commission?

A. Well, we had that debate in the early years of the Commission, and I don't want to say it was a compromise but the decision was to have a Commissioner in the Commission responsible for disability issues and that's what happened. But that's somewhat changed because as I said I'm not there now necessarily just on disability issues, there's a whole range of other issues. What I would really like to see, and I'm struggling to do this, is to set up a unit within our Commission that deals with disability because I can't do it dealing with children and economic and social rights issues as well. And so we are looking for funding in relation to setting up a unit that could do that. A unit that could work on sensitivity issues, because we do human rights education and very often we require an element of sensitizing people around diversity and more particularly the issues of people with disability. I can't do that, I mean there are just too many things happening. And so we really require people who can actually be there to do that kind of thing, and it's something that we're looking at.

Q. Is the Commission at the Presidential level?

A. No, it's a constitutional body so we report directly to Parliament and we can report to the President. And the reason that we're outside of government, I think for us, it has been really critical to maintain independence and impartiality from government. It's because one of our formal mandates is to monitor government, and you can't be in government and monitor government and therefore it's been important for us to be outside of that. And it's often a very strange or strained relationship where you advise, you monitor - very often people say we are both the judge and the prosecutor, etc.

Q. You obviously would have to do a lot of negotiating, I would think?

A. Yes, I think yes, certainly negotiating has become really important for us. First of all it really speeds up a lot of things - instead of going through lengthy and expensive court processes. But even just in terms of the cases we get, because very often we are able to just mediate instead of going to court. Mediate, educate, talk, negotiate- that's becoming more and more of what we like to see. There was a time when the Commission was issuing subpoenas to like19 Ministers and Directors General, and it was a bit rough but I also think it was necessary at the time to show that the Commission had teeth and that we weren't afraid to use them. Also, that there are responsibilities and Constitutional obligations that the state has in terms of responding to our requests for information. I think it's also a question of growing and maturing and finding different ways of communicating.

Q. Do you actually publish every year for example how well each Ministry is doing in that regard?

A. Yes, we submit a full report to Parliament on how the various departments have progressed on the particular rights in question and then we make recommendations where we think there are gaps. And that's what I said early on, that sometimes those recommendations will include looking at the development or amendment of legislation. I think we, as a Commission have been less efficient in terms of following up on our recommendations. So that's something that we are possibly looking at having a monitoring person in our Commission who looks at the recommendations. Because we make recommendations not just in relation to the state but we make recommendations in relation to individual cases that we settle. And that often requires some follow up -"Has it happened? Did it happen effectively? If not, why not?" and where to go from there. But we have some very interesting cases in the wings. There's a disability discrimination case that we hope to be taking to the Equality Board. We've just opened up our Equality Board and there's a case that's come up that I think is right for that.

Interview with Lars Odegaard of the Norwegian Association of the Disabled (NAD)

Q. Tell me about your organization?

A. My organization is not an umbrella organization. In Norway, a population of 4.5 million, we have this nearly ridiculous situation where we have 115 different, separate organizations for disabled people in this small country. And what we realized 15 or 20 years ago was that it would be almost a disaster to follow up with the separation of organizations, so we decided that we would, within our organization, NAD, that we would have affiliated organizations, disability-based organizations within our association. So we are not an umbrella, we are a member-based DPO with now 12 affiliated organizations. Our main structure is by local branches, we have approximately 360 local branches organized through 19 regions and a national body which contains this structure and the 12 affiliated organizations and a youth organization as well.

Q. Tell me about the affiliated organizations - are they only representative of people with physical disabilities or is it crosscutting?

A. Only physical disabilities, except we have also among the 12, one parents' association and many of their children have multiple handicaps. But NAD is an organization for physically disabled persons.

Q. Why is that? If an organization representing mental disabilities wanted to be a member and wanted to be part of NAD would you allow that?

A. Yes. Everyone who wants to be a member of our association is free to be a member. And we have blind members, deaf members, members with mental retardation, etc. But in general, we have a situation in Norway with so many organizations, that they have their own strong organizations. So we have created an umbrella where we are cooperating and trying to work together on the big political issues in Norway. But we have been involved with international development for 25 years, and in our development work we do not go out and give our services to only physically disabled persons but to everyone in the villages. But in Norway, we were created as an organization of physically disabled people, and we still are an organization of physically disabled. We are 73 years old.

Q. Is there a counterpart umbrella-type organization or affiliated organization for people with mental disabilities?

A. There are two. The biggest umbrella contains approximately 60 organizations, many of them quite small. What they mainly do is work with health-related issues because they are very eager to find medical solutions to their problems. My association has never been particularly interested in the medical approach towards disability, but rather the societal approach. So we have a strong relationship in our umbrella with the Blind Union, with the Union for the mentally retarded and for the deaf-blind and together we are focusing on society's impact on disability. We do not have a curative approach.

Q. How do you work within your government? Do you have an official status with the government?

A. In Norway, we also have this Council on Disability appointed by government and NAD is a member of the Council. The council is supposed to give advice to the government on disability issues. It's a meeting place. When I come to work in the Council it works like this - the different Ministries ask or request advice from the Council, but the Council can also raise issues that it wants to raise. But our main lobbying work is done by ourselves, not through the Council. But we also have this system in Norway where the government gives White Papers to the Parliament on many issues and they then establish a committee to create the basic documents for this White Paper and our association is often invited to be a member of these kinds of committees. So when we are given a proposal or White Paper for the Parliament, we do our own paper on whatever the issue is and then lobby for it within the Parliament within every single Ministry where they are coping with disability issues. This is one of our major tasks in NAD to act as a lobbying instrument for disability issues. We have said to ourselves that we should be very good at describing the situation of disabled persons in Norway but we should be even better in creating good solutions. So this is how we are trying to work. We have a main office with 70 fulltime employees and we also have a journalist on the staff and we are working to raise awareness through media on the issues that we are eager to focus on within the Ministries or the Parliament.

Q. In some countries there are problems because the people in government don't see certain issues as "disability issues" or don't take into account people with disabilities when they are passing legislation or making changes to the infrastructure. Is this the case in Norway?

A. Actually I would say this problem is quite similar in Norway. There are many activities going on really concerning every part of the population, but where disability issues are not raised at all. And we are not invited to take part in a Commission or whatever it is. Then we have to push and sometimes we succeed to be a member of such a Commission and other times we don't. So then we have to push through the media and through lobbying in the Parliament. And also many times we can get a very good solution in the Parliament, stating very clearly that, for instance, the access to trains should be accessible for disabled persons. But still when the results are clear, then we can see that they did not follow up the statement from the Parliament due to what they call "technical reasons." And this happens very often. For instance, we have a new train now from the main airport in Oslo that will probably last for at least 40 or 50 years. They modified the elevators into the train, but in doing so they made them so you could not use an electric wheelchair in them because it would be too heavy. And this is a fact -- that in 2003 in Norway, one of the richest countries in the world, we still have to raise awareness of disability issues. And they are still saying we don't have enough knowledge and that is rubbish. I mean we have fought for these issues for 30, 40, 50 years and of course they have knowledge, but it is ignorance that creates such horrible situations when it comes to accessibility in Norway.

Q. Do you have any legal type of human rights or civil rights law that requires them to make things accessible, similar to the ADA?

A. No, but there is an ongoing process in Norway, this is in the main House now. We have decided some years that our main focus up to 2006 should be new legislation based on the Anti-Discrimination Act. And the government last year appointed a law preparatory Commission and it's working now. It will deliver its report in 2004 and we are hoping that they will advise the government to come up with an anti-discrimination law. But it is a big debate and the present government is a right wing party and they are not particularly interested in this kind of approach. So I think this will be a very big debate and we have a long way to go to reach this. But the legislation when it comes to access to new buildings is quite good -- the problem is to live up to the standard according to the law.

Q. Is there any oversight or ability to monitor - can someone bring charges if it's not done right?

A. Actually no there isn't. What we have to do is through NAD, we have to monitor the situation and raise the issues by lobbying the politicians. We can bring individual cases to court (there is only one court system in Norway) but it is very expensive to do this. One of the reasons why we are asking for this new anti-discrimination act is that we want an act that has with it an instrument to monitor and a governmental body that could monitor and has the tools to both give fines and advocate. We don't want it just to be on paper -- we want it to be powerful. Two years ago, we managed to get an anti-discrimination clause in the employment act, but unfortunately there is no legal body who is monitoring the law, there is no instrument to pursue the ideas behind the law. So we are not able to say whether the law is functioning or not, so we have to have these kinds of instruments.

Q. Tell me a little bit about how your organization is funded?

A. When it comes to the work we are doing nationally within Norway, 80 percent we have to make through our own income generating projects. Approximately 5 percent comes from our membership fees and 15 percent from support from the government. We do mainly two things to raise our funds - we run a big national lottery. We created a lottery that people wanted to buy not because we were behind it, in fact, we did not tell anyone that NAD was behind the lottery because we were very afraid that this could create some sort of charity approach toward the lottery and we did not want that. And the other thing we do is that we run several slot machines. But the slot machines will now be monopolized in Norway, the government will take over all of them. Now, we will have to go out in ordinary business to create our own money. We are facing a huge problem now.

In our international development work, for every dollar we spend, the government gives us five more. So we spend 10 percent and the government is giving us the rest. When we started [our international development work] in 1981, there were three of us - the blind union, the organization of the mentally retarded, and NAD. We had no experience in international development work, so we started in cooperation with the Red Cross Society in Norway. And they followed us for five years and then they left us. So now it is run by Disabled People's Organizations themselves. And what we did was to establish an alliance, what we called the Atlas Alliance, in Norway. Now the Atlas Alliance has nine member organizations, all DPOs. Through the alliance, we are now running projects in approximately 20 countries, 40 projects, for an annual cost between 12-15 million US dollars. So it's quite substantial. Every tenth year, we can apply for the TV campaign in Norway. Every year there is a TV campaign one day of the year in October where approximately 100,000 collectors visit every single home in Norway and collect money. We had this campaign last year and we raised 145 million Norwegian Kroners. Every single penny of this will be spent on international development because we are not collecting money for disability issues in Norway. They consider that to be too much of a charity approach, but to collect this money for international solidarity work is okay. We have in our bank account 145 million Norwegian Kroners (almost $2.1 million US)) and that represents the 10 percent that we are going to use. It's approximately two to three hundred million dollars that we can spend for the upcoming 10 years. We collect 10 percent and the government gives us the rest.

Q. Does your organization ever approach Members of Parliament to introduce legislation on disability issues? Can you ask the Parliament for a White Paper, etc?

A. We do it almost on a daily basis. The president of NAD and I are in the Parliament almost every day, talking to and visiting individually, talking to parties and going into the Committees of the Parliament to lobby and to advocate for disability issues. We do this on a daily basis. What's quite funny or very good is that a big newspaper in Norway in April or May did a monitoring for the last year concerning who were the best lobbying bodies in Norway. Number one was the huge labor organization and second was NAD. We were even better than many of the really heavily financed ones, like shipbuilders. This is what we mainly do. We are serving our members and we also provide a lot of courses trying to help them in their own community to push their local issues. Our main strategy is to raise awareness among our members on the social model of disability, based on the thinking of Michael Oliver and Vic Finkelstein in the UK. This is one part, the second part is the lobbying part, and thirdly we do a lot of creative solutions when it comes to housing, especially creating accessible environments. We have architects on our staff, a lot of technical persons and we produce a lot of information both to raise awareness and to give examples of good solutions.

Q. Do you have local offices, too? The 70 people on your staff, are they all in Oslo?

A. They are all in Oslo. And up to now we had 19 districts, but now we are recreating this. So we are now making nine district offices to make them a bit stronger then today. Before May of next year they will all be running. In addition to that, we have from time to time 10 people in our international development program.

Interview with Sebenzile Matsebula, Director of the Office on the Status of Disabled People (South Africa)

Q. Tell me about how your office works? It's at the executive level, correct? This is unusual, isn't it?

A. Actually, South Africa was the first country to use this model. Since then Mexico is the other country that has a similar structure, and more recently Namibia has adopted a similar structure in the office of the Prime Minister. The way it operates within the South African context, I won't speak for the other countries, is that it is a unit set up in the Presidency to coordinate, to facilitate, monitor and evaluate programs that serve or are designed to integrate disability into mainstream society. That's the overall mandate of the office - the coordination unit, the facilitation unit, and also to monitor and coordinate. We are not a service delivery unit because that is a function of each and every line-function Ministry or government department, for example, the Department of Heath. Their role is to ensure that people get proper health care facilities, etc. The Department of Labor has its role, etc. But our responsibility is to make sure that it actually does happen. So in a sense it's like a policing body.

Certain things need to happen, and sometimes things don't happen in government for whatever reason. And the reason why the office is located in the highest office in the land is because a Minister that gets a direction from the President on a particular issue that they are not serving or performing on, will certainly be forced to comply. Otherwise if every Minister was left to do whatever he wanted to do, there's always a reason (sometimes a legitimate, valid reason) why they cannot do it. But in this particular case it's set up to ensure that what government sets as policy about integrating disability into mainstream society does happen as integration into mainstream society. That is our focal reason for existence, to ensure that disability is integrated into every facility of mainstream society in South Africa.

Q. Where does proposed legislation come from?

A. It comes from Parliament. Legislation is the job of Parliamentarians, and that is why (as the Minister was alluding to this morning) that South Africa has the highest number in the world of Parliamentarians with disabilities. It is precisely because it's part of an effort to promote integration of disabled persons, and therefore in Parliament every piece of legislation that goes through is supposed to ensure that disability is part and parcel of that legislation.

Q. So everyone who's a Member of Parliament knows that he or she is supposed to be thinking about disability no matter whether they are transportation, or commerce, or agriculture or whatever.

A. Precisely. But over and above that the whole idea of having Parliamentarians with disabilities is because they experience disabilities, so someone without a disability might want to say, "Ok, we want to ensure that disability is part and parcel of this particular legislation" but because they are not disabled they will not necessarily want to make sure that that piece of legislation actually goes through. So the Parliamentarians with disabilities who are part and parcel of that machinery make sure that it does happen.

Q. Are there goals established across the board for the various governmental agencies, and if so where do those come from?

A. Since independence in 1994, in every structure created since that date, the South African Government has ensured that there are disabled persons in those structures, for example, in the Human Rights Commission, the Gender Commission and the Youth Commission. Moreover, the people that would then be deployed to those various systems would come from the disability movement. So the disability movement would be informed through various channels that the Commission that goes through Parliament and the President would inform them that this process was going through. So they would say that they were selecting Commissioners for a particular Commission, can you make sure you give us a number of names that you recommend, and then those names would be submitted and go through the normal routine that everybody goes through to ensure that they are qualified to serve in that Commission. So they actually come from the disability movement.

Q. Are there specific numerical goals for, let's say, employment or education?

A. The only quotas we have are for the employment of disabled persons. The government has said that by the end of next year, two percent of the staff of every agency and company should be disabled persons and the Department of Labor has set up a process to ensure that it happens. There's registration of companies, they have annual sessions where service providers go out and check on how many disabled persons that they employ. But it's not only disabled persons that this particular system is following. It's part of the Employment Equity Act that caters to all disadvantaged people, including women, black people and disabled persons. But then over and above that, there is the 2 percent that speaks purely to disabled persons being employed.

Q. Would it then be the role of the Office of the Status of Disabled People to go back and monitor, to look at each company and see what is happening?

A. The primary monitoring function for that is with the Department of Labor, because their main function is to monitor labor issues. And then they report to us. We have quarterly reporting sessions with all governmental departments so that's how we are able to keep tabs on the development of all processes, not only at the Department of Labor but all processes that go on.

Q. From where does your office receive financial support?

A. From government.

Q. If you wanted to undertake a new initiative, say a public relations campaign, can you do that? Is that within the function of your office?

A. Well, that particular one, a public campaign, we are running a public awareness campaign because that's one initiative that doesn't fall within any particular department or scope. So we plan for that. South Africa has a three-year planning process, so we'll plan that and in the third year, the government will provide the necessary financing for that. We are embarking on that this year. It's our first big public awareness campaign. And all our funding will come from the government.

Q. Do you work at all with informing the private sector - do you do outreach to them?

A. Well, because we are just starting with that project [the public awareness campaign], we will. That's in the plan. The plan that we have will certainly incorporate everybody in society but we want to target mainly the corporate sector because they're the people with the money, they're the people, outside of the government itself, that are big employers. So we're going to target our program to them so they can understand what disability is all about and employment of disabled people - training, etc. It's unfortunate because I really can't speak about it because we haven't actually started, we've got plans but we haven't started yet. We just recruited a manager. But we will certainly be targeting business as a primary role player.

Q. What has been a success in the US is to highlight those employers who do a good job - use them in the ad campaigns, etc.

A. We are already doing that on a provincial level. Our Office of the President is at the national level but we also have provincial offices, also called Office on the Status of Disabled Persons, in every province. They are already running those campaigns where they will have awards - an annual event - where they'll have particular categories, whether corporate sector or whatever, where they will recognize the effort of companies or whichever category they have selected that year to recognize their efforts in promoting the rights of disabled persons, including employment of disabled persons.

Q. Do you have an oversight rule with regard to other departments?

A. Precisely. As I said, we have required reporting systems. What we have is an integrated national disability strategy. It has a whole set of recommendations at the back for every government department that say these are the things that the government departments need to do. It's not complete because it was done in 1996 and new ones have since come on board, but at least that gives you a framework for what government departments are supposed to do. So they would follow those recommendations and then we at the national level work at what we call the Inter-Collaboration Committee on Disability. In that Committee, we are represented by people who are nominated by the Director Generals of each department to represent the department in that Committee. And it is in that Committee where, at the beginning of the year, we'll have a planning session where they'll come and report on their plans and programs for the year. Then four times during the course of the year, they'll come and report to us on the progress so far on the implementation of those various projects that they reported on [at the beginning of the year]. So that's at the national level. We have a similar structure at the provincial level, which is the Inter-Provincial Forum which also constitutes all the government departments at the provincial level who come and report on their programs. Their plans are critiqued - is this what the country really needs at this particular point? If it passes, then they go ahead and implement and report on it quarterly. So that's the monitoring part I was talking about earlier.

Q. With the issue of new policy - can your office suggestion legislation if you see a need for it?

A. It works both ways because people who sit in Parliament are there to represent constituents, so constituents will tell Parliamentarians, "This is the issue. What are you doing about it?" And then Parliament calls us. We have regular reporting to Parliament via a committee called the Joint Monitoring Committee on the Status and Quality of Life of Youth, Disabled Persons, and Children and that Committee is headed by a disabled Parliamentarian. Now that Committee will then call me or they'll call anybody from all the other departments depending on the issue. And they'll ask if they are aware of the particular process, and go and do something about it. Then the government official will go back, because we have the resources to do research or whatever, and then subsequently develop a policy. But you see the policies come from the Department. They only go to Parliament for approval so that they go through as legislation.

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