RI Congress on Rethinking Rehabilitation: Overview of Keynotes

The four- day intensive program, June 21-24, was developed around invited plenary presentations and parallel sessions addressing the theme of "Rethinking Rehabilitation" from various points of view. The Congress team, led by President Kirsti Kolle Grondahl and Arne Heimdahl, President of RI Norway, and Ann-Helen Bey, Chair of the Program Committee,   reviewed hundreds of abstracts and biographies of suggested speakers. Recently the plenary presentations and abstracts of other presentations have been placed online at the Congress website: www.ri-norway.no/text/view/1802.html

Following is an overview of some key threads, points and flavor of some of the plenary presentations of specialists from Europe, Africa, North America, the Arab region and Asia.

After an uplifting video message in support of disability rights from Ms. Mary Robinson , former UN High Commissioner for Human Rights and former President of Ireland, Prof. Tom Shakespeare of the UK Policy, Ethics and Life Science Research Institute, challenged the participants to think through the complexities and contradictions of some of the new genetics policies being advanced in some countries vs. the human rights platforms gaining support from the same governments in the quest for a UN convention on human rights of people with disabilities. Shakespeare also pointed out the discrepancies between the current focus on impairments caused by genetic "misspellings," representing a small portion of the "disability pool," and the global realities, where 30,000 children die each day due to preventable diseases.

Update on Uganda

The situation of disabled people in Uganda was explored by two speakers. Uganda's Minister for of State for Elderly & Disability Affairs, Florence Nayiga Sekabira, explained the quota system adopted nationwide to enable election of thousands of people with disabilities to positions on local councils up to the national Parliament. Concerning the role of disabled Parliamentarians, Sekabira outlined several responsibilities: to make laws for effective governing of the Republic of Uganda, to initiate and influence laws and policies in favor of people with disabilities, to mobilize disabled Ugandans for development and to lobby for effective service delivery to people with disabilities. Prof. Susan Reynolds Whyte of the Institute of Anthropology, University of Copenhagen, who conducted fieldwork for many years in Uganda and East Africa, recounted an interesting case study of numerous disabled Ugandan entrepreneurs who have obtained tricycles to develop a cross-border service, providing self-sustaining livelihood for themselves and their families, and at the same time creating an effective disability lobbying group on the national level.

Intractable: Poverty & Disability

Other speakers concentrated on the so far intractable problems created by the interface between disability and poverty. Gro Harlem Brundtland, former Prime Minister of Norway, and, most recently, Director General of the World Health Organization, reviewed how investments in health services were directly attributable to growth in some of the fastest moving economies of Asia. Brundtland emphasized that "The Nobel economics prize laureate, Amartya Sens defines poverty as 'deprivation of capability,' arguing that people are poor not just because their income is low, but because they do not have access to basic services such as health and education, which would increase their freedom." She summarized: "A majority of disabled people are among the very poor--living on less than a dollar a day...At least 20% of the poorest people in the world are disabled...Combating poverty implies preventing ill health and disability, and empowering people with disabilities to be full participants of society."  

Speakers Judy Heumann, Disability Advisor for the World Bank, and Venus Ilagan, Chair of Disabled People's International, echoed the need for increased and immediate attention to improving data and analysis about the interrelationships between disability and poverty. Ilagan stated: "Disability groups in developing countries lack economic expertise, so they have not yet developed a persuasive case for including disability in development thinking on economic grounds." She believes the discussions about the UN convention could provide unprecedented opportunities to bring this topic to the attention of the highest levels of governments and concluded that: "We are fortunate to live at a time when global leaders in every corner of the world are discussing disability in a way it has not been discussed before."

Have you done enough?

Lars Odegaard, chair of Atlas Alliance, the Norwegian umbrella group of domestic disability groups involved in international development work, and officer of the Norwegian Association of the Disabled, a membership-based advocacy group, strongly challenged all present at the Oslo Congress, whether they were sitting in soft chairs or on soft tires, to ask themselves if they had done enough to changes the dire situation of disabled people in developing countries. He commented about receiving various reports in recent years about plans for change from government agencies, disabled people's organizations and non-governmental organizations, all worded in the correct terminology, but he wondered whether any radical changes had occurred in actuality. Odegaard summarized that Norway would continue to take a forward position in international efforts to improve the situation of people with disabilities in poor countries.

Women & Children

Two other speakers honed in on the failure of initiatives thus far to improve the deplorable situation of disabled women and children, left to fend for themselves in most countries. Ms Sheikha Hessa of Qatar, the UN Special Rapporteur on Disability outlined her priorities for the immediate future: disabled children and women, poverty and increasing attention to those disabled by intellectual, developmental and psychological impairments. She reported on a recent meeting of women with disabilities in Yemen, reiterating that isolation was still a significant barrier to their participation in society. Speaking with participants after her presentation, Ms. Sheikha Hessa stated she would support efforts to develop outreach to disabled Arab women as part of the program for RI's Arab regional conference in Bahrain in late 2005.

State Secretary Jan Otto Risebrobakken, representing Norway's Royal Ministry of Health, defined the objectives of rehabilitation: "to provide physical, psychological and social support in order to facilitate integration and participation." He commented that, "One of the greatest challenges of rehabilitation on a global basis is to improve the situation of women and girls with disabilities." One of the new Norwegian projects he announced was a strategic plan developed by the Ministry of Health to provide rehabilitation services for children "to ensure that children with disabilities, like all other children, have a childhood that provides growth and development in everyday life."

Toxic impact of Exclusion

Finally, two speakers delivered heartfelt addresses that placed exclusion at the center of the lived experiences of people with disabilities the world over. Bengt Lindqvist of Sweden , retiring UN disability rapporteur, recalled his first meeting with the UN Human Rights Commission, where he was asked to sum up the disability experience in as few words as possible. After thinking through his visits to various countries, rich and poor, he chose one word: exclusion. "If you study the situation of disabled persons in different cultures, you will find exclusion is always present," Lindqvist said, continuing, "you will come across thousands of ways and degrees of excluding people with disabilities, young and old, from mainstream services and activities in our societies, even in affluent countries. We will only put an end to exclusion by bringing disability related needs into the mainstream of development."

Patricia Deegan, Ph.D., of the U.S., brought the same message home, based on her experiences with psychiatric and mental health services. She described how her early interaction with these services resulted in the exclusion by rehabilitation professionals of all other considerations of her personality, life experiences, skills and aspirations. She recalled, "When I was 17, and still in my final year of high school, I experienced psychosis and was brought to a mental institution. Once there, I was diagnosed with schizophrenia. Once diagnosed, the label...took on a master status in terms of my identity. The fact that I was a good athlete, that I enjoyed being in nature, that I was the oldest child from a large working class family, was of little interest to the professionals around me...Re-thinking rehabilitation means getting on with the work of reforming the infrastructure of rehabilitation policy and funding so that the self-directed care opportunities are available to all people with disabilities. It is the means through which we can be self-determining. It is the way that those of us with disabilities can exercise our freedom to be incurably ourselves."

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