By Ilene Zeitzer
"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)
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?
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.
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.
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.
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.
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."
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.
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.