Disabled Persons in Positions of Governance: an analysis

"By definition, a government has no conscience, sometimes it has a policy, but nothing more."
Albert Camus (1913-1960)

"The welfare of each is bound up in the welfare of all."
Helen Keller (1880-1968)

Goal of the Project

This report seeks to answer some basic questions about the effect of having people with disabilities in high positions of governance. Does it really make a difference? When people with disabilities serve in high positions of leadership, do governments develop "a conscience;" at least, do non-disabled politicians think about the impact on people with disabilities when they develop policies? What are the systemic differences in the ways that some countries are integrating disabled people in positions of governance? What are the differences, if any, in being elected versus being appointed to positions of high leadership concerning self-perceptions of disabled leaders? Does having disabled colleagues raise the awareness of non-disabled politicians on the issues that stem from coping with a disability in a non-disabled world? Once in positions of governance, do disabled individuals see themselves as spokespersons for all other disabled people or do they avoid or shy away from being perceived as a "poster child" or a single issue expert? Finally, what do disabled leaders see as their impact on the welfare of their respective countries?

Background

This study was undertaken on behalf of the National Institute on Disability and Rehabilitation Research (NIDRR) of the United States Department of Education. It is part of the five year International Disability Exchanges and Studies (IDEAS) for the New Millennium project by the World Institute on Disability in collaboration with Rehabilitation International (RI) based in New York, the International Living Research Utilization (ILRU) project at The Institute for Rehabilitation and Research in Houston, and the Inter-American Institute on Disability (IID), based in the Washington, D.C. metropolitan area.

The study was initiated because, although since the 1980s people with disabilities have been elected and appointed to high governmental positions in many countries, the impact of this phenomenon, thus far, does not seem to have been analyzed, measured or even explored, at least as far as could be detected through literature searches.

There are probably many explanations for this lack, but the most likely one is that disabled individuals have only gained access to high levels of governance in various countries fairly recently. Much as the ascent into leadership by women a few decades before, the research that studied the impact of the gender shift lagged behind the actual gains. While there are similarities to the situation of women in leadership positions, the issues for disabled individuals are far more sharply cast and arguably much more difficult to overcome. Though there were, and unfortunately probably still are, governmental, political and other groups in every part of the world who question the capacity of women to occupy positions of leadership, for the most part, those societal obstacles have become recognized as fallacious and/or outdated thinking.

Unfortunately, the same cannot be assumed when it comes to having disabled individuals in positions of leadership. Helen Keller, the blind and deaf American author and lecturer who was known throughout the world expressed it best when she said, "My darkness has been filled with intelligence, and behold, the outerday-lit world was stumbling and groping in social blindness." Although Ms. Keller died in 1968, the "social blindness" she referred to unfortunately continues to survive in many places and certainly among many individuals. Part of the reason for this is the actual absence from mainstream societies of disabled persons.

Tyranny of low expectations

Either because of separate service systems such as residential or educational institutions or because of physical access barriers, people with disabilities are often isolated and unable to participate in the mainstream. Thus the non-disabled society never sees or focuses on disabled people - they are marginalized and out of view. That absence results in what some refer to as the "tyranny of low expectations." In other words, having no experience with interacting with disabled individuals, non-disabled people have universally low expectations of their capabilities, based largely on myth and stereotype. The non-disabled world either views people with disabilities as sick or needy or both, but in any case, not as workers and even less so as leaders in positions of high responsibility. Their disability is assumed to be such a limitation that it is assumed they could not fulfill the demanding duties of their office.

The worldwide community of people with disabilities has fought for decades to retire or shun the medical model of disability that has so darkly colored and limited the views of non-disabled people. But in many parts of the world, disability still equates with illness. Disabled individuals travel halfway across the globe by jet planes into airports that have been made accessible only to be met, not with accessible taxis, but with ambulances. Labor laws in many countries still mandate shorter work days, specified rest periods and longer vacations for all workers with disabilities irrespective of whether the particular disability warrants it or the individual worker wants or needs it. Whether driven by good intentions or not, this tyranny of low expectations equates to societal ignorance and prejudice that all of the people interviewed for this report have had to deal with during their lifetime as disabled individuals and most certainly in their roles as leaders.

Basis of this analysis

This analysis is based on a series of interviews conducted over approximately one year with disabled leaders from several countries of the world. Most of the interviews were in person with many of them in conjunction with the Rehabilitation International African Regional Conference held in Durban, South Africa in September 2003 or in conjunction with the RI World Congress held in Oslo, Norway in June 2004. Some interviews were conducted via telephone. In addition, two symposia on the subject of disabled people in positions of governance were held in Durban and Oslo at the above-mentioned conferences. The information gathered provides insight into the difficulties encountered by disabled individuals as they assume positions of leadership. None of them said that they suffered from self-doubt or fear that they were unprepared for the tasks that lay ahead. On the contrary, most expressed that they had the ability, training and in-depth knowledge needed to achieve the tasks of their particular positions. In addition, many spoke of feeling that being disabled made them especially well suited to handle the requirements of their jobs because their disabilities provided them with specific insights that their non-disabled counterparts simply did not have. Nevertheless, all of them to a greater or lesser degree have struggled to "fit" into a non-disabled framework; to speak for disability but not to be only about disability. In the sections that follow, these themes will be explored in greater detail.

I. How Governments have Integrated People with Disabilities into Leadership Positions

The manner in which the subjects of this report gained leadership roles is as different as are their backgrounds, cultures, languages or nature of their disabilities. Ostensibly, one could argue that there are only two options for how these leaders came into positions of power: either they were elected or else they were appointed. However, within those two broad possibilities, there are, in fact, several variations on a theme.

Some, like Anne Begg, a Member of Parliament from Scotland or James Langevin a Member of the U.S. House of Representatives, were elected through a general election process in which the fact of their disability (both are wheelchair users) was not relevant, or at least had nothing to do with why they were on the ballot. In direct contrast, individuals like Wilma Newhoudt-Druchen, a deaf Member of Parliament in South African, was recruited to have her name placed on the ballot because she is a person with a disability. The African National Congress (ANC), the leading party in South Africa, deliberately recruited highly qualified disabled individuals in different areas by working directly with the major disability Non-Governmental Organizations (NGOs). The NGOs were asked to develop a list of well-qualified individuals and then their names were placed on the party's national list. The ANC's strategy is quite simply to ensure through this process that people with disabilities will have a voice in Parliament. It is part of their overall philosophy to counter the oppressive tactics of the past apartheid governments where minorities were excluded. Thus, in 1999, 10 individuals with disabilities became Members of the South African Parliament - the highest representation of any country in the world. As a result, Newhoudt-Druchen is expected to represent the needs of disabled South Africans. As she said, "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."

In sharp contrast, Anne Begg initially saw her role quite differently: "When I was elected first, I was actually quite keen not to be seen as the disabled MP and if anything, I probably shied away from even talking about disability issues. I tried first of all to win my support or get my credibility of being an effective MP on behalf of my constituents who are not disabled, but are the people who live in my district in Aberdeen. The only way I could do it was by not becoming a mouthpiece for disabled people." Similarly, U.S. Congressman Langevin said, "In my service in government, I've never made disability issues my primary focus. Just as being disabled is part of who I am, it is not the sole focus of who I am or what I do here. I have many other responsibilities that I take very seriously." Bengt Linqvist, who is blind, was first elected to the Swedish Parliament in 1982. Though he most certainly did not shy away from disability issues, and in fact, said, "I still held the position of Chair of the disability movement the first three years when I was in Parliament, so of course they used me very much and we made a lot of fuss." However, he said he wanted to stress that he had other portfolios and that was very important to him. "I got other responsibilities immediately and that was very encouraging. I got into family policy and childcare and training of doctors." Thus, there is a major difference in the thrust or impact of these two very different ways of ascending to leadership positions. In the South African example, the intent is to right previous wrongs by taking pains to ensure that, just as with other minorities, people with disabilities are represented in the governance process and have their views articulated by people who are seen as most competent on or best able to know the issues. In the UK, US and Swedish examples, almost the opposite view appears to be in effect: namely that disabled individuals are so much a part of the mainstream that they can be in positions to speak for all their constituents, the vast majority of whom are not disabled.

Of course, both situations are something of an artifact because, in truth, Newhoudt-Druchen's deafness does not necessarily make her any more of an expert than a non-disabled person might be, concerning the problems of people who are quadriplegic or who have mental illness, for example. People with disabilities are not a homogeneous group any more than are Hispanics, so to a degree, speaking for them or representing them is something of a conceit. Begg addressed just that point by saying, "I've been very keen to avoid that label [of a mouthpiece for disabled people] because disabled people are not a homogeneous group, we've all got different views, different aspirations, different expectations and that often, one person cannot speak on behalf of all disabled people." Representative Langevin voiced similar sentiments: "I don't seek to be the sole spokesman for disability issues, or in a sense, the poster-child for those issues." On the other hand, it is equally misleading to paint the positions of Begg and Langevin as so much a part of the mainstream that they can be free to represent all their constituents without concern or reference to disability. The truth is that each of them in their respective countries is unique - they are almost the only disabled people elected to high levels of government--so, by default, they become spokespersons for disabled individuals. As will be seen in a following section, both came to that recognition fairly quickly after assuming the duties of their offices.

Florence Nayiga Sekabira's election to the Parliament in Uganda was a different process than either of the above examples. Sekabira, who has a mobility impairment, explained that since 1996, Uganda has embraced an all encompassing movement system of government whereby there are no parties but instead, all groups elect their own. Therefore, disabled people had to organize to elect their own leaders to the five seats in Parliament reserved for them. It was totally up to the disabled Ugandans to decide how to divide up the representation. They began by dividing the country into four regions and then decided on exactly how they wanted the representation to be accomplished. For example, they determined that they wanted one seat for women with disabilities and therefore, it could be contested for only by disabled women. The other four seats were to be contested for by both men and women to try to ensure balanced representation. Then they organized Electoral Colleges to which each district in Uganda sends representatives. When the time comes to elect MPs, each district is asked to send four people - one with a visual impairment, one with a physical disability, one with a hearing disability and the last with any other disability. They all come to the Electoral College in Kampala, draft their manifesto, and whoever wishes to serve as a Member of Parliament goes to campaign. Only disabled people can vote for their candidates and whoever they elect then become MPs and do not require any endorsement from government. Minister Sekabira explained that, as the elected person to Parliament on behalf of disabled women, she was supposed to immediately focus on issues of disabled women but was not limited to that topic. She was also supposed to focus on national issues while always being vigilant to ensure that disabled women were considered in these other issues.

Ugandan model

The Ugandan model is perhaps the purest form of representative democracy of any of the models discussed. Not only are the MPs there specifically to speak for disabled people, but disabled people actually decide on just how they want to be represented in terms of types of disabilities, gender and geographical districts and are the only ones allowed to vote for their representatives. And while the disabled MPs do have national issues that they are responsible for, their role is clear - they are to watch out for and represent the interests of disabled Ugandans. On the other hand, as Sekabira points out, disabled Ugandans have a lot of clout because not only do they vote for their own disabled MPs, they also vote for other MPs in their communities where they live. As she says, "Disability awareness in Uganda really even impresses me. When it comes time to debate disability in Parliament, there's no 'who has a disability and who doesn't have it.' The MPs themselves get it because in their constituencies, disabled people come to them, they don't wait for us only, they also go to other Members of Parliament because they vote for them too."

Another variation on a theme...

The two Scandinavians - Ann-Marit Saebønes of Norway and Bengt Lindqvist of Sweden - present yet another variation on the theme of people with disabilities in elected positions. However, it must be pointed out that each of them has held various leadership positions that were both elected and appointed and they have even gone back and forth between those two situations. For example, Lindqvist, who is perhaps best known for his most recent role as the previous United Nations Special Rapporteur for Disability, was, prior to that, a Member of the Swedish Parliament from Stockholm. In the middle of serving in Parliament, he was appointed the Minister for Health and Social Affairs, a post he held for six years, then was re-elected to Parliament. His second term would not have been up until 1998, but he left in 1996 to assume the UN Special Rapporteur position. In 1991, Ann-Marit Saebønes was elected the Mayor of Oslo, Norway and served from January, 1992 until December 1995. After her party lost, she became the Chairperson of her party in the City Council. Currently she serves in an appointed position as Director General of the Child, Youth and Family Agency for Norway at the national level. Both Lindqvist, who is blind, and Saebønes who is an amputee, came to their leadership roles from strong backgrounds in the disability movements of their respective countries. Lindqvist's successful chairing of a project in 1980 called the White Book that looked at the consequences of capping social expenditures got a lot of attention and was credited with helping the labor party come back into power in 1982. As a result, the party asked him to run for Parliament from Stockholm and he became the first disabled Minister in Sweden. Similarly, Saebønes was tapped to be the Norwegian labor party's nominee for Mayor, as a result of her prior work in the city as Ombudsperson on behalf of the users of social services. In both cases, their names were put forward on the ballot by their respective parties, not because they were disabled, but rather because they were well known candidates whose names would be recognized by many of the voters. In short, the skills they honed in leadership positions in their countries' disability movements provided them with the tools to deal with mainstream social issues and it was their demonstrated mastery of the latter that thrust them into public office.

Appointed Officials

As was the case for Bengt Lindqvist and Ann-Marit Saebønes, the national organizations of disabled people (DPO's) have also served as the incubators for the careers of many of the individuals interviewed for this report who are or were in appointed positions. Certainly, in many of the African examples, the leadership has been recruited directly from the ranks of the disability advocacy organizations. The reason is perhaps quite obvious; those with disabilities who were skilled in advocating and lobbying outside the government are in the best position to know how to work within the framework of the system to affect changes. Susan Chitimbe, who has a mobility impairment, was appointed as the Minister Responsible for Persons with Disabilities in the Office of the President of Malawi and is a case in point. She says, "Because I am in government now, I understand the problems of disabled people out there in society and I can take their concerns to the Parliament."

Moreover, in Malawi, it is not just that a few people with disabilities are appointed, but rather that the government has a very close working relationship with the disability organizations. As Chitimbe explains, "The policy we have now is the policy that has been written by non-governmental organizations, typically organizations of people with disabilities working with the civil society, and government officials." To be clear, the individuals who ascend to leadership posts from disability organizations are recruited as much for their skills and expertise as well as for the fact that they are natural liaisons to the disability community. Therefore they bring to the job, their own educational skills and background; their firsthand knowledge of the issues; their credibility with the disability community; and, armed with that portfolio, they are likely to have significant clout with their non-disabled peers in government.

Bert Massie, a lawyer, wheelchair user and long-term disability advocate was appointed the first Chair of the Disability Rights Commission (DRC) in the United Kingdom in 2000. Before being selected for the DRC, he had spent years with the Royal Association of Disability and Rehabilitation (RADAR), where he had won a reputation as someone who lobbied hard for the rights of disabled people in the UK and who knew how to work with government to achieve his goals. Nevertheless, his selection was not simply a question of being appointed. Instead, it followed the required process as a public appointment. There was a stipulated open competition process involving civil servants and an external examiner to ensure that the civil servants were being fair. The top candidates' names were then sent forward to the Ministers who chose which of the three or so names they wished to appoint. In the case of the Chair, the selection also had to be approved by the Prime Minister, so Massie's appointment was essentially blessed by Tony Blair.

Judy Heumann of the United States is perhaps one of the more fascinating examples of someone who came into a high level position in government from a position of an extreme outsider. Heumann, who contracted polio at 18 months of age, is widely recognized for being one of the founders of the Independent Living movement that has now become a worldwide movement. While still in New York, Heumann founded Disabled in Action in the early 1970s, one of the country's first disability political action groups, and then a few years later moved to California to help develop the newly-founded but already influential Center for Independent Living in Berkeley.

In 1977, Heumann played a leadership role in arguably the seminal moment for disability rights in the United States. The issue concerned some little, almost unnoticed provisions, called Section 504. Tacked on the end of the Rehabilitation Act of 1973, Section 504 made it illegal for any federal contractor, or any other institution or activity that received federal funding to discriminate against anyone "solely by reason of ...handicap." At some point, the leadership of the US disability community realized what a powerful tool for civil rights Section 504 could be. The problem was that the government, especially the then Department of Health, Education and Welfare (HEW) had been stalling in implementing the provisions and was even trying to draft new regulations that would have weakened them. Some disability activists called for and staged demonstrations around the country to protest and, in Washington, DC some protestors even chained themselves to the desk of the then Secretary of HEW.

However, the most famous protest took place in San Francisco. Led by Heumann, about 120 disabled demonstrators occupied the 6 th floor of the regional HEW office for 25 days. Initially deprived of food and all access to health, cleanliness support and telephones, they nevertheless held on. Their stories were picked up by the press, they gained supporters and sympathizers all over the country and eventually prevailed on all counts. Their story is now legend but it speaks volumes about the progress that the U.S. disability movement achieved in a mere 16 years. Proof of that progress is that one of the first disabled appointees tapped by the Clinton Administration in 1993 was Judy Heumann. From chaining themselves to the desk of the Secretary of Health Education and Welfare, people like Heumann were now occupying high level desks. As Assistant Secretary in the Office of Special Education and Rehabilitative Services, Heumann became one of the Secretary of Education's most trusted advisers and she used her personal experiences to fight continually to improve access and outcomes for children and youth with disabilities. Judy Heumann's experience in the U.S. Department of Education helped pave the way for her current position as Disability Advisor with the World Bank but she, like all of the others mentioned above, owes much to the advocacy skills honed from earlier days in the disability rights movement.

II. As Leaders with Disabilities, What Have Been the Similarities of Experience?

Does having a peer or colleague with a disability raise the consciousness level of non-disabled politicians and bureaucrats? Do they gain appreciation of the abilities of their disabled colleagues as well as awareness of the challenges of having a disability from working with disabled leaders? At some point, do non-disabled politicians and peers become so comfortable with working with disabled colleagues than they no longer see the disability first, but rather the individual? Do disabled leaders gain acceptance as being knowledgeable about topics other than disability? This section will explore these questions through the perceptions of those in both elected and appointed positions.

Impact on their Peers

All those interviewed for this study stated unequivocally that their presence has had significant impact in raising their non-disabled colleagues' personal awareness of the issues surrounding disability, but many indicated that it was a protracted struggle to get there. Several spoke about the initial difficulty as being one of credibility; i.e., not to be seen as having attained the office simply as a kind of compensation prize or a form of tokenism because of having a disability. Susan Daniels was appointed to her position initially as Associate Commissioner, then later as the Deputy Commissioner for the Office of Disability and Income Security Programs (ODISP) in the U.S. Social Security Administration (SSA) in the Clinton Administration. In the latter position, she had responsibility for the two largest programs of SSA, namely the old-age retirement program and the disability programs. Daniels, who is hemiplegic and uses a scooter as a result of contracting polio in infancy, holds a Ph.D. in rehabilitation. She talked about the reception she got when she reported for duty at SSA. "I think everyone was enormously uncomfortable with my disability, not only my subordinates, but my superiors and my colleagues, they were all pretty uncomfortable with the whole thing." She felt that the discomfort level of her colleagues stemmed from not knowing how to address her disability or whether to address it at all. She stressed that they were all very kind, but very unaccustomed to dealing with a person with a disability, particularly a superior. She said she told them, "Don't worry about the disability-related stuff. I'll tell you when I want you to do something, and when I don't want you to do it, I'll also tell you and no hard feelings."

In addition, she felt that initially, at least, they regarded her appointment as a sort of tokenism. "I think, at first, they assumed all kinds of things because of the disability that weren't true such as I didn't have any idea about how the government was run. They seemed like they didn't know I had any knowledge at all about disability issues, even though everybody could see on my resume that I taught at a university for 15 years in the area of disability." Further difficulties resulted when Daniels asked for certain work accommodations that were not on the agency's usual list of accommodations such as adapted computers, sign language interpreters or publications in Braille. Among the issues was her need, for medical reasons owing to the paralysis, to have an upgraded airline seat with more leg room and a footrest to elevate her legs and also to have an attendant fly with her when she traveled. Among her hassles was the bureaucratic red tape that required her to submit forms every 6 months from her doctor attesting to her continuing disability (acquired at 6 months of age). In addition, she also had to work to raise the awareness level of her superiors as to why she needed an attendant when she traveled when she did not require one in her daily office work.

I think they thought they knew a lot about accommodating disabled employees - they had a self-image that they knew how to do it and that they had done a fabulous job. So when I went in and made demands that were not on their approved list of reasonable accommodations, it threw them. Secondly, I was a political appointee not a career employee, so that made it even harder for my superiors because they did not want any of the political people to be perceived as taking advantage of their jobs to get more perks than other people did.

That concern meant that Daniels was not supposed to advocate for herself lest it appear that she was taking political privilege, a situation the she found "very difficult because she was in no position to criticize or do anything about it." When the head of the agency changed, Daniels was finally able to use the occasion of the new Commissioner to put her accommodation needs on the table and to indicate that she would resign unless they were met. She was then given all the requested accommodations and was promoted to the rank of Deputy Commissioner.

For Susan Daniels, the education of her non-disabled colleagues came with a great deal of difficulty that was probably exacerbated by their excessive concerns over perceptions of political impropriety. Nevertheless, some of the problems were also driven by her superiors' ignorance of disability conditions, coupled with mistrust of the motives. For example, the non-disabled superiors would have understood if Susan needed an attendant all the time during the workday, but they did not understand why she needed one only when she traveled. They had to be educated that she required an attendant when she traveled because she needed help to get dressed in the morning but once dressed, was able to function without an attendant at the office. Similarly, they were able to understand that her health required her to fly in an upgraded airline seat but, until it was explained to them that she needed help with eating, using the lavatory and so forth, did not understand why her attendant needed to sit with her in the upgraded section. All of these aspects demonstrate that one of the impacts of having a disabled person in a leadership role is really to educate the non-disabled to understand what having a disability entails on a day-to-day basis. Moreover, working with disabled colleagues helps non-disabled people to grasp that each person with a disability is a unique individual whose needs cannot be categorized simply by the nature of the disability.

Anne Begg's colleagues actually did the most intelligent thing to try to accommodate her when they learned it was likely that she would be elected to a seat in Parliament - they simply asked her what she needed. Begg describes being approached by the Chairman of the Ways and Means Committee in 1997 and being asked if it looked likely that she would win. When she said "yes" he asked her for a list of what she thought she might need so they could be prepared. "I guessed I would need an office quite close to the Chamber and to a handicapped accessible toilet. I knew I would need a comfortable chair that I could get my feet up in. I wrote it all down and sent it off. The first day after the election, I was shown into this wonderful, huge office that most MP's only dream about."

Similarly, Langevin reported that his election forced changes for individuals with disabilities to serve in the U. S. Congress. "There have been physical changes since I arrived here such as renovating my office, making some changes to the floor of the House of Representatives, adding a new speaker's lectern in the well and removing some seats on the floor. When I first spoke, I just used a lapel mike but then they changed to a lectern that raises and lowers so that I can get my feet underneath and speak right from the well like anyone else." As the elections of Begg and Langevin demonstrated, typically the facilities have to scramble to create an accessible environment when someone with a disability is elected or appointed. This reactive rather than proactive mode can also be triggered by someone in office who is not disabled suddenly joining the ranks of the disabled, whether temporarily or permanently. Moses Masemene, the Minister of Justice in Lesotho who is blind was previously, in 1993, a Member of Parliament. He recounted how a chief who had been an MP became disabled in a car accident and was home recovering for the next session of Parliament. Masemene said:

During this Parliament session, I advised the Senate to facilitate his attendance so they built a ramp to the Senate House. He now attends as a chief and although he is not in charge of disability questions, he is disabled. I think that had an impact on the Parliament because they had to make it accessible to him. With disability, social attitudes don't change fast but they do when it becomes necessary.

Elected to the Swedish Parliament the first time in 1982, Bengt Lindqvist predated, by more than 20 years, the current group of disability leaders who benefit from today's technology. He commented that his presence contributed to making disability more visible in the political process. "I came with my white cane, every time we had a voting procedure, I came in, so everyone saw me, everyone reflected." His peers and colleagues asked him how he managed to do his job, especially how he got his information a critical issue for blind individuals. In an era before the Internet and accessible websites, he was provided with two secretaries to assist him. They recorded a lot on tape for him and the important texts were produced in Braille. They also had bought him a scanner. "We had a colossal machine, it's now in the museum because the Parliament bought it for half a million crowns and it took two people to carry it. You know now a scanner is about 2,000 Crowns and the size of a pack of cigarettes!" By the time he was reelected after serving in government for 6 years, the Parliament was completely computerized and he no longer needed the two extra secretaries that had constituted a 20 percent additional cost over those of other MP's.

As Susan Daniels pointed out, much of the adjustment problem she encountered with the non-disabled personnel at SSA stemmed not from malevolence or prejudice, but rather from unfamiliarity. Judy Heumann found very similar problems when she took up her position with the World Bank. She described being invited to a meeting of high level Bank personnel and being asked by the caller if she could come to the main building. At first, Heumann thought maybe she had a different building in mind but then quickly realized that the woman was concerned about Judy's ability to get to the meeting because she uses a wheelchair.

I use that as an indicator of how people's lack of exposure to those of us who have disabilities is so significant that they are still continually thinking that they have to compensate by coming to me because I can't go across the street. In fact, of course, in my motorized chair, I can go any place anyone else can go provided there are no steps, but they don't see that. This person had actually seen me before but people cannot distinguish between those who might have difficulty getting across the street and those who can. When I first came to the Bank, I was going around to senior leadership and I realized that their schedulers would say that these vice presidents would come to my office. Having worked in the federal government, I understand pecking order and I knew that vice presidents don't come to advisors, advisors go to vice presidents. So I finally just said to my staff that I would not have them come to my office, I would go to theirs because they needed to see that I could get to their offices.

Education of non-disabled peers is one thing, but for disabled leaders to become effective in their roles, they also found that they needed to establish a comfort level with their non-disabled peers. Heumann tells the story of being in a senior staff meeting early on in her tenure at the Department of Education where one of the senior staff said that if they didn't do something, "they would be cut off at the knees." Heumann, whose duties included administering the Rehabilitation Services Administration, quickly retorted, "Oh, and then you'll send them to me for rehabilitation services." The person chairing the meeting became immediately embarrassed and said, "I'm so sorry, we're learning the appropriate language." Heumann said she literally put her hands like a time out request, laughed and said, "I was joking." She said it took some time however before the comfort level developed that fostered progressive dialogue. "It took a while before people outside 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 substance, and not based on their feelings about how they would affect me."

The comfort level issue is also sometimes closely linked to cultural prejudices. For example, Wilma Newhoudt-Druchen explained that when she first entered the South African Parliament, other MP's did not speak to her because they didn't know how to approach a deaf person, but after awhile they would come up to her and ask her questions.

They would come to me and ask me certain signs and so they became more aware of deaf issues and sign language. Many of the black MP's - 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 of the MP's family members are disabled and now they will tell me about them and are proud of the fact. They will tell me about their brother's child who is deaf or blind or disabled in some way.

Florence Nayiga Sekabira of Uganda also talked about how her presence in her prior position as an MP and currently as the Minister of State for Elderly and Disabled Affairs has helped change cultural biases toward disabled people.

In our local language, whenever someone saw a disabled person, they would say that person is a "cata yamba" meaning someone who is helpless. Now because many disabled people are serving on local government councils, the term has also come to mean "councilor." So the public had to change the language because when they meet a person with a disability, they no longer know whether they are talking to a councilor or any other person. When I was elected as an MP in 1996, an education officer in the Ministry where I work today was addressing some government people about the need to change this "helpless people" term. He pointed out that as an MP, I would be entitled to a vehicle and if I came upon one of them stranded on the road and gave them a lift, how would they be able to explain that their rescue was dependent upon a helpless person?

Impact on the Public

When asked about what they thought the impact was of their being in high level positions, many of those interviewed were quick to mention the satisfaction they receive from knowing that they are serving as role models to adults and children with disabilities. Whether from developing or industrialized countries, the comments on this issue were almost identical. For example, Florence Nayiga Sekabira of Uganda said,

We're acting as role models to many -- to the young people with disabilities and other disabled people and even to parents who have children with disabilities. It gives them the knowledge that having a child with a disability is not a curse as it used to be thought. Instead, that if their child's potential is developed, she can contribute to the family and to the nation at large.

Anne Begg of Scotland said about being an MP,

It breaks the taboo that if you got a disability, you can't handle a high pressure job like serving in Parliament. My constituency is over 500 miles away from Westminster, so I'm flying up and down every week. So if someone with my kind of physical impairment can still lead an incredibly busy life, it shows that it can be done and it's up to other people with disabilities to come in and do it.

Begg's comments were almost identically echoed by Rep. Langevin's of the US,

I would hope that my election to Congress has served to inspire and motivate other disabled people to serve in government, to know that they can achieve an election to office or any other goal or desire they have to work in any field. I like to believe that many of the lives that I touch, although I may never even meet these people, maybe just seeing me doing what I'm doing will hopefully help them know they can do the same thing.

One aspect that the study's leaders encountered across the board was that they were soon sought out by their non-disabled peers for their expertise in disability. For those whose election or appointment was, in fact, expressly to represent those interests, such as some of the Africans, that role was understandable and appropriate. However, some like Charlotte McClain-Nhlapo went even further to ensure that disability issues had a voice. McClain-Nhlapo, is a lawyer, currently Commissioner responsible for children's rights and disability rights on the Human Rights Commission of South Africa and is a wheel-chair user. She explained that when she first came to the Human Rights Office, there was a person with a disability who had been appointed through a process of disabled people putting his name forward and he then became the Commissioner for disability issues.

I came in on the issue of child rights but obviously even in that regard, the issues that were of concern to me were those relating to the rights of children with disabilities. So for me it was very important to have somebody in my office who was responsible for disability issues and who was disabled, but also, at that level of rights issues, to be able to introduce the disability perspective to it. I think it is important to have a person who is disabled in a position like that and not to have a non-disabled person talking about disability rights. That way, you have somebody there who can motivate for disability issues at the level of developing policy on a cross-cutting basis.

However, for those whose elections were not related to representation of disability issues, the situation was far more complex and their personal reactions to that role, more conflicted. For example, as mentioned above, both Rep. Langevin of the US and the UK's MP, Anne Begg, were eager not to be seen as spokespersons for disabled people. However, after assuming their duties they realized that, as essentially the sole persons with disabilities in their positions of governance, they had an almost moral responsibility to weigh in on disability issues. As Langevin says, "Certainly when I speak on disability legislation, I have credibility on the issue. I live disabilities, I grew up with a disability, so therefore I can convey not just what I think about it, but also my experience on the issue to my colleagues." Begg echoed those sentiments. "The longer I was an MP, the more I realized that I obviously had an expertise and a knowledge that many others didn't have and that I would be doing a disservice to large numbers of people if I didn't speak out from my own experience." Ann-Marit Saebønes' initial viewpoint about her disability differed from Langevin's and Begg's. Because her disability is less obvious, she describes how she deliberately brought it up.

When I was elected Mayor and even when I was running for office, I had a lot of interviews. I talked very freely about my disability because I think it is important to do so. Many people don't realize that I am disabled when they see me because I can walk fairly well with my leg, and people do not see my hand at first. So in interviews, I talked about what it was like to grow up with a disability, what kind of troubles it caused and what can be expected from society. So I never tried to hide it, on the contrary, I used it actively.

All three of these elected officials reported that once they took on the issue of speaking for disability issues, they have usually been very successful with their colleagues. As Saebønes said, "The effect my disability had in the City Council was that when I went to the Chair or made a speech and said we are suggesting this or that, it was very difficult for the other parties to reject it."

III. What Has Been the Effect on Policy and Legislation?

The core question of this study is whether having people with disabilities in high leadership positions really makes any difference? Do policies change; do governments develop a "conscience" about what it means to be disabled? Perhaps, more importantly, do politicians and other non-disabled peers gain an understanding and awareness so that all proposed programs and policies eventually are screened through a disability lens? This section begins with the disability lens question because, as Judy Heumann points out, disabled people cannot do it all -- they must educate and make advocates of their non-disabled peers. The second aspect that this section will examine in some depth is how disability advocacy is structured within the framework of advising or informing the government on disability policy issues. In exploring this question, the report will move from a micro to a more macro perspective. The individuals interviewed are, for the most part, not the ones already mentioned in this report but instead were selected as spokespersons for their organizations. Therefore, they were asked not so much about their experiences from a personal perspective, but rather about the structure of their organizations, how these interact with government, the role that they play and what quantifiable outcomes have been achieved.

One of the paradoxes mentioned by some of the leaders in this study was that, at a certain point, having earned the support and trust of their non-disabled peers, the latter tended to want to "dump" anything seen as a "disability problem" on them and they had to educate and persuade them to take responsibility. For example, Bengt Lindqvist described a fairly common situation he encountered as an MP,

There's no doubt than my colleagues in the government - there were 22 Ministers - very often came to me because they knew I was a disability advocate and said, 'Well, this is a disability issue, this must be yours.' I would have to answer, 'No, it's an education issue but it happens to be a concern for some people with disabilities, but it's your portfolio.' Sometimes I had to fight to make them take their responsibility and I think that was an education process between us because they wanted to give it all to me... so there was a learning curve.

Judy Heumann made a similar point concerning her efforts at the World Bank.

I think what's also important is that we get other people who may or may not be affected by disability to argue our points and I think that's where we gain legitimacy...Everything should be perceived of as needing a disability lens. In the end we may not prioritize that we can do everything, but any office of the Bank needs to ask if disability is a component of the work we could be doing here. I recently met with infrastructure people on a series of issues that they are dealing with. Maybe one of the issues didn't really concern disability -- building dams or something like that -- but of the six issues, five are related to disability. If you cannot do all five at once, then let's start with one or two so that people get a better understanding of what we mean when we say "to include a disability lens" so they begin to learn by experience what to do. So things are slowly beginning to happen that way here. For example, I was at a meeting where they were laying out an agenda and somebody asked 'where was disability?' and I almost fell out of my chair. 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.

Charlotte McClain Nhlapo also commented about the need not to always be the only one carrying the water for the disability cause.

Not too long ago there was a big conference on disability and the right to work and employment. I particularly thought it was not a good idea 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 are dealing with, so that when they talk about equality, they too can talk about disability and not necessarily to have me there to do that.

Increasingly around the world, politicians and therefore governments have begun to recognize and respond to the issues surrounding disability. Whether because of the efforts of disability advocacy groups, or in response to economic pressures stemming from swelling disability pension rolls or because of human rights concerns, whatever the reason, many governments have taken steps to try to address the myriad issues through specific disability policy initiatives. One rather common response of several countries in the last 5-10 years has been to create offices specifically responsible for disability issues across the board or for the related human rights aspects of disability. For example, among the countries in this report, Mexico and South Africa have both established specific disability offices in recent years. The other general model used by governments to inform the disability debate is through the use of advisory bodies that typically are independent of government and often represent a cross-section of disabilities. These latter bodies may be an actual federation of disability organizations or, instead, may simply be an ersatz umbrella organization in that it has no actual members but nevertheless does speak for all disability concerns. As has been mentioned briefly in an earlier section, in some countries, legal protections concerning human rights issues for people with disabilities are ensured through specific authorities established for that purpose. Finally, some countries such as Malawi and Uganda have elevated previously elected MPs to the status of Ministers specifically for disability issues. The sections that follow will examine in more depth how these different models function.

The Specific Disability Office Model

Sebenzile Matsebula, who is the Director of the Office of the Status of Disabled People in the office of the President of South Africa and a wheelchair user, mentioned that South Africa was the first country to have such an office at the executive level. "Since then Mexico is the other country that has a similar structure and more recently, Namibia has adopted a similar model in the office of the Prime Minister." Matsebula explains that the functions of the office are "to coordinate, facilitate, monitor and evaluate programs that serve or are designed to integrate disability into mainstream society." The office does not deliver services or propose legislation - the former are the responsibility of each Ministry or governmental department and the latter that of the Parliament. Instead, "our role is to make sure that what is supposed to happen actually does happen. In a sense it's like a policing body." She explained that the positioning of the unit in the office of the President was deliberate.

A Minister that gets a direction from the President on a particular issue on which he is not serving or performing, will certainly be forced to comply. Otherwise, if every Minister was left to do whatever he wanted, there's always a reason (sometimes a legitimate, valid reason) why they cannot do it. But in this case, it's set up to ensure that what the government sets as policy about integrating disability into mainstream society does actually happen.

The goal of overall coordination is also mentioned by Victor Hugo Flores as the rationale for the structure of the office in Mexico. Flores, who uses a wheelchair, is head of the Office of Representation for the Promotion and Social Integration for Persons with Disabilities said the creation of the office was the specific desire of President Vincente Fox. Fox initially asked the heads of 16 different offices that he created to coordinate policies over specific issues to develop a master plan on what they were going to do, how they were going to do it and with whom. There are weekly cabinet meetings with the Ministers and the coordinating offices. "Our office that coordinates public policy towards disabled people asked in one of these meetings that each ministry develop one specific program including or focusing on disabled people."

Flores's office in turn created a National Council on Disabilities that includes the five main Ministries where disability issues would figure most prominently, i.e., Education, Communication and Transport, Labor, Social Affairs and Health. Each Minister assigns a Vice Minister who is responsible for operation of this National Council. In both the South African and Mexican examples, it is clear that placing the disability office in the office of the President was intended to send a signal to all Ministers that disability was a top level priority and that coordination and cooperation around these issues was a requirement. However, in addition to the idea that each MP knows that he or she is supposed to be thinking about disability and therefore to be promoting a mainstream agenda,

Matsebula describes an additional "insurance policy" aspect to the South African approach of also having Members of Parliament who are themselves disabled. "The whole idea of having Parliamentarians with disabilities is because they experience disabilities. So someone without a disability might want to say "ok, we have to ensure that disability is part and parcel of this particular legislation but because they are not disabled they may not necessarily want to make sure that that particular piece of legislation actually goes through.

Independent Advisory Bodies

In the United States, the National Council on Disability (NCD) is an independent Federal Government agency tasked with advising the Administration and Members of Congress on all matters related to disability policy. Initially created in 1978 as a council of Presidential appointees to advise the President, it was located administratively within the Department of Education. It was so ineffective that by 1983, when hearings were held to consider its reauthorization, most of the disability community and many others, including Lex Frieden, recommended ending it. Instead, they recommended a Blue Ribbon panel to advise the President on disability issues. The Congress took both suggestions, combined them and made the Council a small, independent agency, (with a current budget of about $3 million), so that it had the freedom outside of the Administration to give advice and publish findings and advice. Frieden, who became the Executive Director for the Staff at NCD through the 1980's, currently serves as Chair of the Council whose members are appointed by the White House and which reflect the majority party. The Council sets the priorities and goals that NCD will follow and staff carries out their directives. Frieden is quadriplegic and the Council's 13 members are either persons with disabilities (typically well-known advocates), professional working in the field or parents of disabled children. In addition, it is commonplace that the Council members also reflect diversity in gender, ethnic background and types of disability. Frieden remarked that though NCD has no formal or legislative obligations to consult with disability groups or provider groups, in reality, it does just that.

NCD has always done an exceptional job of involving and working with and consulting with the disability NGOs, probably not a very good job always of consulting with provider organizations and some others but by its very nature and history, has had a bias towards a consumer viewpoint. The job of the Council is to make recommendations on disability policy to the President and the Congress. Those recommendations are only as good as they are valid and they are only valid if they are substantiated by good data, by good rationale. In order to get those data and that rationale, you have to do consultation wit the community, you have to study the literature and you have to synthesize all of that.

In Norway, Lars Ødegård is Secretary General of the Norwegian Association of the Disabled (NAD) which is not an umbrella organization but rather a member-based DPO with 12 affiliated organizations. "In Norway, with 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. So we decided 15 or 20 years ago that within NAD we would have affiliated disability-based organizations within our organization. Our main structure is through local branches - we have approximately 360 local branches organized through 19 regions and a national body that contains this structure and the 12 affiliated organizations and a youth organization as well."

Given what a small country Norway is, NAD's size and scope is even more remarkable in that it does not even include mental disabilities. One of the 12 affiliates does represent a parent's association where many of the children have multiple disabilities, but essentially NAD is an organization for physically disabled persons only, probably owing to the fact that the organization is 73 years old. NAD works with the Norwegian Government through the governmentally-appointed Council on Disability which is supposed to advise the government on disability issues. The different ministries request advice from the Council but, in addition, the Council can also raise issues it wants addressed. However, Ødegård, who is a wheelchair user, stressed that the main lobbying work is done alone, not through the Council. They may be asked by the government to be part of a committee to create a basic document for a Governmental White Paper for Parliament but then, they will also prepare their own paper on whatever the issue is and then lobby for it within the Parliament and within every Ministry that deals with disability issues. The organization has its own journalist and is working to raise awareness through the media on issues that they are eager to focus on within the Ministries or the Parliament.

NAD, which has 70 full-time employees, raises about 80 percent of its operating budget through its own income-generating project. Another 5 percent is from membership fees and the remaining 15 percent is from government. Their main source of income is through running a national lottery but they did not tell people that they were behind it for fear of creating a charity approach. They also had slot machines but the government will take them over and the organization will have to find new ways to cover the shortfall. In addition to its domestic lobbying and advocacy, NAD is also heavily involved in international development work as part of an alliance with other disability organizations.

Disability Rights

Some of the countries have established specific authorities to deal with disability rights issues. As mentioned, Bert Massie was appointed the first Chair of the Disability Rights Commission (DRC) in the United Kingdom when it was established in 2000. The DRC, a by-product of the Disability Discrimination Act (DDA), has a great deal of authority to persuade and induce as well as enforcement powers but only on civil rights legislation, not on human rights law. According to Massie,

This lack of enforcement power has made it difficult for us in representing people in health services because in civil rights, like access to shops, restaurants, employment issues, you can find a comparator. You can say had this person not been disabled, s/he would be treated in one way but because s/he is disabled, they're treated in an alternative way which is less favorable. As that breaks the law, you can bring enforcement powers to bear through the courts, tribunals, and also formal investigations. We have dormant powers on human rights which the government has gone ahead and introduced - it's in the Act but the Minister has refused to sign off on it. So that makes it very difficult to take cases in the health services when you are talking about people's right to dignity because in many cases, the health services do treat people with appalling indignity and arrogance. While it's not the everyday experience, it happens sufficiently frequently.

Massie said the DRC will next formally investigate how the health service treats people with learning disabilities, who, he says, tend to die much younger than other people. As Massie describes it, too often people with intellectual disabilities are ignored or mistrusted by doctors when, for example, they allege having pain. The tendency is to assume the allegation of pain is psychological just as the allegations of pain by people with mental illness tend to be dismissed as having an emotional cause. While the DRC can investigate these types of issues, it has no authority to bring legal cases because of not having human rights powers.

Nevertheless, the DRC has been quite effective in the civil rights realm where it has advocated successfully against employment discrimination and more recently has been instrumental in public access issues for example in pushing for more accessible transport such as the new taxis in London. However, new plans to amalgamate the DRC into one larger Commission that is supposed to have oversight over all discrimination issues leaves many disability advocates quite concerned about whether their issues will get lost in the shuffle.

According to Massie, "We're going to have one major commission, that they think will start around 2007, that will amalgamate the current Commission for Educational Equality, the Equal Opportunities Committee, a commission which deals with gender issues and the DRC and will also expand the role to cover age, sexual orientation and religion." Massie said that the original proposals were not well-thought out at all and would not have worked. Essentially, the government wanted to put everything together and put one person over it, based on an argument that there was no longer any need for disabled Commissioners since everyone was fighting for a common cause.

The problem with that view is that for most discriminated groups, they're fighting the attitudes or behavior of the people, but disabled people are also fighting the whole environment and it's much different. One of the debates has been that disabled people have multiple identities - they're disabled, they're Jewish, they're Black, they're Gay or Lesbian. I said, 'No, people don't have multiple identities, they have many facets to one identity. If you can't go down steps because there's no lift or elevator, then it doesn't matter if you're a Muslim or Hindu.' The solutions are not simply about being nice to people - many who try to be nice to disabled people will still get it fundamentally wrong. So we objected and said disabled people had to keep control of the disability agenda.

Massie and the DRC lobbied and campaigned and made their case successfully. The new body will have, guaranteed in law, at least one disabled Commissioner. It will also have a committee, of which half the members must be people with disabilities that will deal with disability policy as a new organization. Massie and the DRC are still working to ensure that the disability unit will be properly resourced and staffed but they have successfully made the case that discrimination concerning disability requires unique approaches and solutions involving the expertise and experience of disabled people themselves.

As mentioned, in South Africa, Charlotte McClain Nhlapo's portfolio as a Commissioner on the Human Rights Commission includes disability issues as well as children. According to her, people are beginning to introduce disability almost automatically because almost from the beginning of the Commission, there was somebody with a disability at the Commissioner level. The Commission sends out protocols to all the government commissions to find out what progress is being made in terms of the rights that are contained in the South African Bill of Rights and they specifically ask questions about vulnerability and vulnerable groups. One of the Commission's functions is to advise government on legislation whether actively to suggest new legislation where there are gaps or reactively to comment on bills. McClain-Nhlapo said that generally the Ministries are well-attuned to disability and issues of access and human rights and she attributes that to the fact that South Africa has an integrated disability strategy. However, the weakness according to her is that while the governmental policies may indeed address the issues of disability, in actual practice, it has been very different. The Commission has a component of legal services that can receive complaints from any legal entity or from the public on all issues related to the Constitutional mandate that would include disability. However, in actuality, very few complaints are lodged. As she said,

I must say I have been disappointed in that regard because we have had very few complaints related to disability discrimination. I can understand why historically. You are looking at a segment of society that has been excluded, that hasn't really had a voice and therefore, is not really aware of what is out there even within the new dispensation. So people don't use the systems that are in place.

She explains that disabled South Africans either do not know that the system is in place or do not know how to access it. So, on the one hand, she feels the Commissioner should do more to raise awareness among disabled people about their rights, but on the other hand, she fears raising expectations beyond the abilities of the Commission. The Commission does have the authority to take someone to court and can take punitive action, although is yet to do so, but does not have civil authority to sue for monetary damages, for example.

Moses Masemene who is the Minister of Justice in Lesotho reflected on the impact he has had. "When I first came to Parliament in 1993, it was "How did this blind man wind up in Parliament?" But with time I became a force, I compelled them to dialogue, I engaged them in discussion so that attitudes of MPs toward disabilities have been transformed." In his current role, he describes himself as being a sort of nexus between the disability movement and Parliament/government. While Lesotho has not yet reached the point of having a dedicated office on disability rights or specific laws, his office can and does propose amendments to certain sections of laws. He mentioned as examples, building control laws about accessibility and adding a section to a law on sexual offensives that specifies protection of disabled people from rape.

IV. Measurable Progress

It would seem that the disabled leaders interviewed for this report universally agree that their presence has had a positive impact on the attitudes of their non-disabled colleagues as well as on the general public. However, the last area to be explored is whether it has also produced any tangible outcomes as far as policies or programs to benefit people with disabilities? The disabled leaders were asked to name what they considered to be specific positive outcomes of their being in positions of governance. What follows are some selected responses that are exemplary but by no means comprehensive. Readers should refer to the complete interviews elsewhere in this report for further examples and more details.

Ann-Marit Saebønes cited one of the last things she did, not as Mayor of Oslo, but rather as the opposition leader before leaving the City Council. "I suggested that all the things that the City Council buys should be adapted so that they could be used by disabled people so that they would not be discriminated against or excluded. To be honest, I'm not sure the Council knew what they were doing, but they voted for it. So it's there."

Congressman James Langevin pointed to two specific pieces of legislation where he felt his leadership position was influential. The Help America Vote Act ensures physical accessibility to the polling places as well as the availability of accessible equipment at the polls. Secondly, the Foreign Appropriations law in 2004 added new language requiring that any time US foreign assistance funds are used overseas, they must be used in a way that is beneficial to people with disabilities. Specifically, any new construction must be done in a way that is accessible and any reconstruction to the degree possible and all programmatic funds must promote inclusion of people with disabilities. Moreover, the Department of State must produce written reports annually on how well they are doing at meeting these goals. This language marked the first time such goals were part of any foreign appropriations requirements and Rep. Langevin's efforts helped gain the necessary support needed in the House of Representatives.

Within the National Council on Disabilities (NCD) that he helped create in Mexico, Victor Hugo Flores was able to develop seven different programs that did not exist before by working with the appropriate Ministries. In essence, the NCD serves as a sort of clearing house and spur to the Ministries by finding out what disabled people need, then working with the Ministry to help develop the specific programs. One was a program for prevention and rehabilitation inside the Ministry of Health for all the national health system. Flores explained that the health system in Mexico is actually composed of the health systems of five main institutions: the Social Security Mexican Institute; Social Security for State Workers (i.e. federal government workers); Mexican Petroleum (PEMEX); the Navy; and the Army. Their initiative created an awareness program among doctors to prevent disabilities as well as a program to ensure that hospitals are accessible. The last program created within the framework of the National Council was presented in September of 2003 and is a rural area program to support persons with disabilities. It involved a change in the law for the ministry that is responsible for all the rural and agricultural areas. The Mexican Congress assigned $250 million to this specific program to provide training and technical support including technical assistance for projects and for the purchase of equipment. The training is in entrepreneurship, to encourage disabled people in the rural areas to develop their own small businesses. The applicants submit proposals for what they would like to do, for example to grow mushrooms, and then the program pays to train them in both the technical requirements of growing mushrooms as well as the business aspects of micro-enterprise.

In her position as Deputy Commissioner at the Social Security Administration, Susan Daniels was able to influence two very key pieces of legislation benefiting people with disabilities. Arguably the most extensive and well-known is the Ticket to Work and Work Incentives Improvement Act or what is sometimes simply referred to as the Ticket. Daniels said she had a specific strategy in mind when she started at SSA and it was simply, "I cannot be the problem, I have to be the solution. I never told anybody at SSA that they were going about things wrong, what I did was make SSA hear it from other people. I amplified the voices of disability constituents." Daniels sponsored numerous forums so that the voices of consumers, i.e. people with disabilities and especially those on benefits, could articulate to the agency exactly what the barriers were to working or returning to work after acquiring a disability. One of the many issues was the lack of consumer choice. Prior to the advent of the Ticket, the only possibility a disabled beneficiary who wanted to try working had was the State Vocational Rehabilitation (VR) system. However, VR is very selective in who it serves, there are often long waits for service and in general, it had a very poor track record for helping SSA disability beneficiaries with their employment goals. The Ticket created financial incentives for private sector providers to get into the business of rehabilitation. In doing so, it also shifted the control to the hands of disabled people themselves because, rather than being the passive recipients of services, instead, as holders of a Ticket which is a kind of voucher, they decide if they want to use or not, when they want to try using it and with whom. The provisions of the Ticket are too complex to discuss here but suffice it to say that it was landmark legislation that has been rolled out over the entire United States. While there are still problems with it, it is a work in progress that is innovative in the way it attempts to resolve many longstanding barriers to work or return to work by disability beneficiaries.

Daniels' other policy success was in some ways even more remarkable because it came in under the radar but succeeded in accomplishing a long-desired goal of disability advocates. The test of ability to work by SSA disability beneficiaries is called Substantial Gainful Activity (SGA) and was essentially a very low monetary amount per month that bore no relationship to any other measure or index such as the minimum wage. Worse yet, it was not adjusted based on changes in other measures, but rather was adjusted on an ad hoc basis which resulted in sometimes 8 to 10 years between adjustments. Finally and perhaps most unfairly, blind beneficiaries did have their SGA updated on a constant basis resulting in great disparities over the years between what a blind disability beneficiary could earn versus what a non-blind beneficiary was allowed. Hence, disability advocates argued that it was actually a disincentive to attempting real work because it was set so low, that earnings under that amount were of little value to being self-supporting. For years, advocates urged that it be adjusted on a regular basis and that the adjustment be linked to a real measure. However, it took Susan Daniels, with the blessing of SSA's Commissioner, to engineer the change in 2001 that resulted in the non-blind SGA being automatically adjusted based on increases in the national wage index. Again, Daniels encouraged the disability community to advocate for themselves on this issue. She alerted them to the fact that a request for comments was published in the Federal Register. She got the notice for comment posted in every disability location.

I went around giving people labels that had SSA's address on it. I told them, if you don't think this is right, just put it on a postcard in one sentence and then mail it to SSA. We got 3,500 responses, seven or eight is common, 200 for a really big regulation, but we got 3,500. I said, we need to have an uproar for the Commissioner to walk into the Office of Management and Budget and get them to sign off on this regulation, so we created one for him. He loved it because we were amplifying the voice of the disability community and helping to organize it in a way that it could be heard.

Florence Nayiga Sekabira believes that she and the other four Members of the Ugandan Parliament who have disabilities has helped shape disability-friendly policies. Now as Minister of State for Elderly and Disabled Affairs, she sits in the Cabinet where she credits the system "whereby whatever goes through Cabinet is supposed to be disability sensitive. Then Parliament will look at what the Cabinet has provided and if they wish to improve on it, then they do so." Sekabira explained how this system has resulted in access to education for disabled children:

In the case of universal primary education, that's a program created to ensure that every child below age 18 has the opportunity to go to school. Government meets the tuition, the parents have to provide only school fees and money to feed their children and also to buy books. We help to ensure that children with disabilities are provided for because when this program was initially established, it was to pertain to only four children per family. Those would go to school for free, i.e., without paying tuition fees. We insisted that in a family where they have children with disabilities, they should be given priority among the four. So we helped establish that policy.

V. Concluding Remarks

The presence of individuals with disabilities is clearly having an impact around the world in many different ways. Non-disabled leaders are learning about the issues from people who have lived the experience. In that process, non-disabled politically involved individuals are also becoming aware of the competencies of disabled people and are learning not first to see the deficit but rather to appreciate the abilities of their disabled peers. Thus slowly but surely, non-disabled politicians and bureaucrats are learning to ask the right questions and to scrutinize new policies and programs through a disability lens. As leaders, people with disabilities also acknowledge their position as role models for millions of disabled children youth and adults who can aspire to similar or even greater goals.

Finally, it is possible to point to many concrete pieces of legislation and new policies as a direct result of having disabled people in position of leadership. The problem is that thus far, there are simply not nearly enough disabled leaders around the world or in any given country. Until now, those disabled leaders who have gained positions of governance are still rarities - the odd exception rather than something commonplace. If one looks at the general experiences of women or minorities who have attained leadership in political or corporate circles around the globe, it is likely to be quite some time before individuals are simply leaders with disabilities rather than disabled leaders, but it is certainly a goal very much worth pursuing. In the interim, as Judy Heumann suggests, "it helps to gain legitimacy when disability issues are argued not just by disabled people, but by those who may or may not be affected by disability because, then these issues become more mainstream."

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