Publishing Information International Leadership Forum for Women with Disabilities: Final Report Published May 1998 by Rehabilitation International 25 E 21st Street New York, NY, 10010 USA Edited by Barbara Duncan and Rosangela Berman-Bieler Design & Layout Rosangela Berman-Bieler Photography The majority of the photographs on this documents were produced by: Carl Cox Photography, Inc. 16709 Bethayres Road Rockville, MD 20855 For prints of Forum photos, please contact Carl Cox. Some credited photos were produced by Suzanne C. Levine. As a women with a disability, photographer and activist, Levine is the founder of Disability Media Project (DMP). DMP includes an international email list service for women with disabilities that has a membership of over 160 women from approximately 20 countries. In addition, DMP distributes the video Disabled Women: Visions and Voices from the 4th World Conference on Women. For additional information or prints of Forum photos, please contact: Disability Media Project P.O. Box 22115 San Francisco, CA 94122-0115 Voice: 415-387-0617 fax: 415-387-0583 email: Sclevine@wvp.org • This publication was made possible by a contract from the U.S. Social Security Administration/ Office of Disability and a grant from the U.S. Department of Education/National Institute on Disability and Rehabilitation Research #H133D40028. • This publication is also available in alternative formats, including Braille and diskette. Additional print copies: $35 including postage; $15 for developing or poor countries. ---------- Dedication This volume is dedicated to all of the women warriors who could not be with us at the Forum but whose contributions to the cause should be noted. A few are listed here: - Angela Perez, a staunch international advocate for women with disabilities - Elizabeth Boggs and Rosemary Dybwad, who between them kept the international spotlight on the needs of people with intellectual impairments and their families for more than 40 years. All three American leaders died in the period just preceding the Forum. - Theresia Degener, LL.D. of Germany, prominent human rights lawyer and bioethics specialist, who was forced temporarily out of action by the birth of Emil; - Cheryl Marie Wade, U.S. performance artist, poet and editor of the online Gnarlybone News, who was seriously overbooked; - Barbro Carlsson, long established Swedish disability rights champion, who had a family emergency; and - Teresa Selli Serra, Ph.D. of Italy, author of the first UN Statement on women and disability (1975). ---------- Message from the Honorary Chair The White House Washington June 15, 1997 Dear Friends: As I have traveled around the world, I have seen first-hand that investing in girls and women helps to transform communities which in turn can transform societies. While no single social investment is a panacea for women or for developing countries, I do believe that as long as discrimination and inequities persist in a broad-scale way against women, a stable, prosperous world will be far from reality. This especially holds true for women with disabilities. I am thankful for your commitment to providing a voice for those with disabilities. It is my hope that your efforts will inspire communities across the country and the world to follow your example. Sincerely yours, Hillary Rodham Clinton U.S. First Lady ---------- Message from the Forum Co-Chairs Dear Colleagues: We extend our sincere appreciation to you for your part in making the 1997 International Leadership Forum for Women with Disabilities, such a rousing success. The comments have been overwhelmingly positive and it is gratifying that the first-ever international public/non-governmental/private partnership has proven to be a viable model for such global cooperation in the future. As you may know, although originally planned for 300-400 participants, the Forum actually attracted 614 women from 80 countries and territories - a strong indication of the importance and the need these women attached to such a conference. And, even though the higher than expected attendance caused some logistical strains, they were cheerfully overlooked because of the substantive nature of the plenaries and workshops. The hope was expressed by many participants that another country will take up the challenge and organize and host the next Forum in two years. In the meantime, the avenues of communications will be kept open through networks established by the participants. We hope the Forum videos and this final report, contribute to the information exchange and look forward to hearing reports of your progress on behalf of women with disabilities. Judith E. Heumann, M.P.H. Assistant Secretary, Office of Special Education and Rehabilitative Services U.S. Department of Education Susan M. Daniels, Ph.D. Deputy Commissioner, Disability and Income Security Programs U.S. Social Security Administration ---------- Messages from the Forum International Sponsors United Nations The United Nations' concern with the rights of women with disabilities is rooted in the fundamental belief in, and the commitment to, equality between men and women in the equal enjoyment of all human rights enshrined in the Charter of the Organization, as well as in other United Nations human rights and policy instruments. The Organization's efforts are dedicated to advancement of the rights of disabled women for an independent life as full-fledged citizens, who contribute to their society through their talents and experience. The International Leadership Forum for Women with Disabilities focused on education, health, employment, communications, policy, development, and legislative issues and their implications for training trainers for leadership development. It has informed, engaged and empowered disabled women from developing countries to participate on the basis of equality in the development of the communities in which they live, as well as to assume leadership roles in the policy dialogue on issues which affect their livelihood and well-being and that of their families and their communities. The Forum for Women with Disabilities represented direct and practical follow-up to policy priorities of the following international instruments concerning the situation of the people with disabilities; the World Program of Action concerning Disabled Persons and the Standard Rules of Equalization of Opportunities for Persons with Disabilities, the Copenhagen Program of Action of the World Summit for Social Development, and the Beijing Platform for Action of the Fourth World Conference of Women. John Langmore Director, Division of Social Policy and Development International Labour Organization In ILO's continuing efforts to promote equality of opportunity and treatment for women and men in the world of work, women with disabilities is singled out as a particularly vulnerable group that needs special support. Therefore, the ILO Vocational Rehabilitation Branch is currently expanding its program to carry out research, technical advisory services, policy advice and awareness raising activities to ensure that women with disabilities have better access to training, employment and work. The objective is to "mainstream" or fully integrate the needs of women with disabilities into all these activities. ILO is moreover using the International Labor Standards as tools to fight discrimination against women with disabilities in the labor force. ILO's technical contribution and sponsorship of 26 participants in the Forum was a way to demonstrate the organization's commitment to support the rights of women with disabilities to work and income, as well as contribute to their societies. The ILO contribution also forms part of a concrete follow-up on the Beijing Platform of Action's request to international organizations to support and assist in opening the doors for women with disabilities to achieve leadership positions in the world of work. Gabriele Stoikov Chief, Vocational Rehabilitation Branch International Labour Organization Rehabilitation International Rehabilitation International was proud to join in the unique partnership which resulted in this outstanding event of 1997. Now, we need to press forward together against the combined weight of cultural restrictions, gender-based violence and archaic attitudes which prevent the access of disabled girls and women to education, employment and adult roles in their communities. Inspired by the many reports of both problems and progress by the 600 Forum participants, RI moved quickly to establish a Task Force on Women and Girls, ratified by its Assembly, meeting in Korea in September 1997. Co-chaired by disabled women leaders from Australia and Brazil, the Task Force is now building a diverse membership in order to develop programs working directly with the grassroots in interested countries. It will focus on locating support for projects that encourage mentoring and training opportunities, and which document "best practices" in measurably improving the situation of girls and women with disabilities. Task Force membership, regardless of organizational affiliation, is geared toward leaders who want to continue the collaborative approach which proved so successful with the Forum. In 1998 RI staff and Task Force members are working with other disability organizations to: influence the UN Commission on the Status of Women to include women with disabilities within their priorities, expand public awareness through targeted dissemination of the Forum videos, and provide regional opportunities for disabled women and their allies to network at RI conferences taking place in Hong Kong and Jerusalem. We will most warmly welcome your participation in any or all of these initiatives. Susan Parker Secretary General Rehabilitation International Disabled Peoples' International The International Leadership Forum for Women with Disabilities had a great significance for the DPI Women's Committee and many other women around the world. This Forum was a demonstration of how women with disabilities overcame barriers, and traveled across the continents to meet together in Washington D.C., and unified their voices as one. It was also a unique opportunity for women with disabilities and non-disabled women from diverse communities to analyze and compare their common situations in life; sometimes successful experiences, but most the time experiences of isolation and neglect. The Forum's plenary sessions and workshops were a great source of knowledge, information and inspiration for all participants. DPI was very proud that so many of our delegates were able to attend this important event. The legacy and inspiration obtained from the Leadership Forum will remain alive among the women the who participated. For DPI, the most important outcome is that the Women's Committee was recharged with energy and has set a long term agenda to continue the spirit of vitality and strength to follow our quest for equal opportunity and inclusion in a society for all. At DPI, once again, we want to congratulate the International Leadership Forum organizers for their excellent work in planning and organizing this important event. We also deeply appreciate the sponsors support for making this event possible-- an event that will remain in the memories of hundreds of women with disabilities worldwide. Lucy Hernandez Wong Executive Director Disabled Peoples' International ---------- Foreword from the Forum Director Story of the Forum Some of us met for the first time in 1995 to press the disability agenda forward amidst the challenging circumstances of the UN 4th World Conference on Women and associated NGO Forum in China. Research interviews conducted there showed widespread, grassroots need for an international event to provide leadership training, networking and exchange of practical information on projects to benefit disabled women and girls. Disabled women leaders from around the world also wanted an opportunity to plan national strategies for follow-up to the Beijing Platform for Action. In early 1996 staff of the World Institute on Disability, Rehabilitation International and Mobility International USA, using the resources of their joint grant (The U.S. National Institute for Disability and Rehabilitation Research/ International Disability Exchanges and Studies --IDEAS 2000), began looking for partners. The magnitude of results, achieved largely through the dynamic efforts of the Forum Co-Chairs, Judy Heumann and Susan Daniels, is illustrated by the list of sponsors elsewhere in this volume. More than 100 scholarships were provided to disabled women through the combined generosity of the International Labor Organization, the U.S. Information Agency and Agency for International Development and the United Nations, as well as other international groups and numerous private sponsors. The Results Everyday I hear from someone whose life was changed by the Forum or about an organization whose batteries were recharged there. By all reports, the Forum was a smashing success and the historical event we hoped it would be. Our Forum Final Statement has already been used in various meetings and conferences throughout the world, drawing attention to our priorities and our insistence that they be taken seriously. The Seoul International Disability Conference reserved a day for sessions on disabled women and the associated meeting of the UN Economic & Social Council for Asia & the Pacific (ESCAP) adopted a statement recognizing our concerns, following lobbying from Forum organizers. The ILO consultation on disabled women in late 1997 involved several Forum contributors. The Future So far, we have been informed of the following follow-up initiatives for 1998: an international symposium on microcredit for disabled women to be organized by MIUSA; special sessions of the DPI World Congress in Mexico City and the RI regional conferences in Hong Kong and Jerusalem; and a possible collaboration of the U.S. Departments of Education and Social Security to provide regional and domestic meetings for young disabled women on employment and leadership skills. Hopefully, the Forum has been a significant step in empowering ourselves and in building networks and unity to improve the quality of life for disabled women all over the world. We ask that you keep the network alive and growing by informing us of any national, regional or international initiative to benefit disabled women and girls. Kathy Martinez Director, International Division World Institute on Disability ---------- Editor's Note Dear Readers: As one of the event products, this volume is comprised of reports and selected papers of the International Leadership Forum for Women with Disabilities, held 15-20 June 1997 in Washington, DC, USA. Taking into consideration the enormous amount of information and number of presentations throughout the intense agenda of the Forum and the impossibility of publishing all of them, papers for this document were selected on the basis of two main criteria: - if they contributed substantively to producing a portrait of the situation of disabled women and related initiatives worldwide; or - if they provided concrete information and guidance on the implementation of policy and research to advance the status of women with disabilities. Additionally, we were biased towards papers describing activities in developing countries or areas where little is known about women with disabilities. The papers have been edited for clarity and space, but each remains the viewpoint of the author. We are pleased to include an Executive Summary of the research and evaluation conducted during the Forum by Tanis Doe, Ph.D. . To order her full report, please see page 187. Supported by the U.S. National Institute for Disability and Rehabilitation Research, the evaluation report analyzes reactions of participants to Forum program and activities, while the research report summarizes the myriad of focus groups and interviews on aspects of leadership development held during the Forum. We believe the data and information in these reports can provide important guidance to those organizing future projects or carrying out research concerning women with disabilities. This volume is also being produced in Braille, large print, audiotape and is available on disc. For a list of other Forum products, including videos, a disc of addresses of Forum participants, and associated reports, please see page 187. Barbara Duncan & Rosangela Berman-Bieler March 15, 1998 Foreword from the Forum Director Story of the Forum Some of us met for the first time in 1995 to press the disability agenda forward amidst the challenging circumstances of the UN 4th World Conference on Women and associated NGO Forum in China. Research interviews conducted there showed widespread, grassroots need for an international event to provide leadership training, networking and exchange of practical information on projects to benefit disabled women and girls. Disabled women leaders from around the world also wanted an opportunity to plan national strategies for follow-up to the Beijing Platform for Action. In early 1996 staff of the World Institute on Disability, Rehabilitation International and Mobility International USA, using the resources of their joint grant (The U.S. National Institute for Disability and Rehabilitation Research/ International Disability Exchanges and Studies --IDEAS 2000), began looking for partners. The magnitude of results, achieved largely through the dynamic efforts of the Forum Co-Chairs, Judy Heumann and Susan Daniels, is illustrated by the list of sponsors elsewhere in this volume. More than 100 scholarships were provided to disabled women through the combined generosity of the International Labor Organization, the U.S. Information Agency and Agency for International Development and the United Nations, as well as other international groups and numerous private sponsors. The Results Everyday I hear from someone whose life was changed by the Forum or about an organization whose batteries were recharged there. By all reports, the Forum was a smashing success and the historical event we hoped it would be. Our Forum Final Statement has already been used in various meetings and conferences throughout the world, drawing attention to our priorities and our insistence that they be taken seriously. The Seoul International Disability Conference reserved a day for sessions on disabled women and the associated meeting of the UN Economic & Social Council for Asia & the Pacific (ESCAP) adopted a statement recognizing our concerns, following lobbying from Forum organizers. The ILO consultation on disabled women in late 1997 involved several Forum contributors. The Future So far, we have been informed of the following follow-up initiatives for 1998: an international symposium on microcredit for disabled women to be organized by MIUSA; special sessions of the DPI World Congress in Mexico City and the RI regional conferences in Hong Kong and Jerusalem; and a possible collaboration of the U.S. Departments of Education and Social Security to provide regional and domestic meetings for young disabled women on employment and leadership skills. Hopefully, the Forum has been a significant step in empowering ourselves and in building networks and unity to improve the quality of life for disabled women all over the world. We ask that you keep the network alive and growing by informing us of any national, regional or international initiative to benefit disabled women and girls. Kathy Martinez Director, International Division World Institute on Disability ---------- Table of Contents Publishing Information _____________________________________ i Cover Art & Dedication _____________________________________ ii Message from the Honorary Chair______________________________ iii Message from the Forum Co-Chairs____________________________ iv Messages from Forum International Sponsors____________________ v Foreword from the Forum Director_____________________________ vii Editors' Note ____________________________________________ viii Table of Contents__________________________________________ ix PART I: Reports & Statements EXECUTIVE SUMMARY International Leadership Forum Brings together Women From 80 Countries to Report on Progress & Strengthen Networks _____________________ 2 CONSENSUS STATEMENT International Leadership Forum for Women with Disabilities ________ 7 MIUSA'S FINAL REPORT Women's Institute on Leadership and Disability _________________ 11 PART II: Selected Papers MADELEINE ALBRIGHT Remarks by The U.S. Secretary of State _________________________ 19 BIRGITTA ANDERSSON International Development Assistance: SHIA´s Experience____________ 22 FRANCINE ARSENAULT Partnership: The Key to Growth _______________________________ 27 MARCA BRISTO National Council on Disability _______________________________ 30 JANE CAMPBELL From Breakout to Breakthrough: 25 Years of Advocacy _________ 33 SUSAN CHITIMBE Organizing for Legislation and Policy Development_________________ 36 SUSAN DANIELS The Right to Work __________________________________________ 38 BARBARA WAXMAN FIDUCCIA A Disabled Feminist on Sexual Politics___________________________ 43 CARMEN LÚCIA FOGAÇA Improving the Access of the Disabled People to the Labor Market in Brazil _______________________________ 46 RINA GILL Public Education & Health: How to Approach Disabled Women's Issues __ 51 JUDITH E. HEUMANN Education: Engine of Empowerment __________________________ 55 RACHEL HURST Communication - The Basis of Our Liberation Struggle_______________ 59 VENUS M. ILAGAN Community Organizing: KAMPI's Experience in Philippines___________ 62 ANNELI JONEKEN United Nations Conventions: Practical Applications ________________ 66 JENNY KERN Women Wheelchair Builders __________________________________ 70 CHARLOTTE V. McCLAIN Promoting the Rights of Women with Disabilities: Progress Report on South Africa ______________________________ 72 EVY MESSELL The ILO Experience with Employment Strategies and Women with Disabilities ______________________________ 78 DOROTHY MUSAKANYA Building Leadership Among Disabled Women in Southern Africa _______ 82 YUKIKO OKA NAKANISHI Situation of Women with Disabilities in Asia _______________________ 86 KAREN NGAI Running a Small Business: An Experience in Hong Kong _____________ 92 MARGARET A. NOSEK U.S. National Study on Women with Physical Disabilities _____________ 94 MARY O'HAGAN Finding Our Own Power ______________________________________ 97 MASAKO OKUHIRA The Independent Living Movement in Japan _______________________ 101 ALEJANDRA POVEDA Opening Legal Inroads for Equal Opportunities in Costa Rica __________ 102 JORDANA RAJKOV "Stepping out of the Circle": Disabled women in Yugoslavia moving towards independence _______ 106 RICHARD W. RILEY Remarks by the U.S. Secretary of Education ______________________ 107 JUNKO SAKAIVA Eugenic Ideology in Japan _____________________________________ 109 MARSHA SAXTON Feminist Bio-Ethics & Disability _______________________________ 110 KATHERINE D. SEELMAN Communication and Technology: Women's Work___________________ 114 DONNA E. SHALALA Remarks of the U.S. Secretary of Health and Human Services _______ 117 JOSEPHINE O. SINYO Education for Children with Disabilities in Kenya ____________________ 120 LESBIA SOLORZANO Women with Disabilities in Nicaragua ____________________________ 124 PAULINE WINTER Holding Up Our Half of the Long White Cloud _____________________ 126 TAMARA ZOLOTZEVA Organizational Development of Disabled People in Russia __________ 129 CARMEN R. ZUBIAGA Encouraging Women Through CBR _____________________________ 130 PART III: Talent Night & Farewell Party Album CHERYL MARIE WADE Poem: I Am Not One Of The ___________________________________ 137 Talent Night Album ___________________________________________ 138 Farewell Party Album _________________________________________ 140 PART IV: Research & Evaluation TANIS DOE Executive Summary of Forum Research and Evaluation ______________ 142 PART V: Useful Documents & Resources Fact Sheet: Women & Disability ______________________________ 153 Disability Extracts from Beijing Declaration & Platform for Action United Nations Fourth World Conference on Women ________________ 157 Selected Resources on Women with Disabilities _______________ 168 PART VI: Forum Information Forum Program ___________________________________________ 184 Forum Organization___________________________________________ 185 International & U.S. Government Sponsors_________________________ 186 Non-Profit Organizations & Private Sponsors_______________________ 188 Acknowledgments ___________________________________________ 189 Participating Countries ________________________________________ 189 Forum Products _____________________________________________ 190 Forum Products Form_________________________________________ 191 ---------- EXECUTIVE SUMMARY International Leadership Forum Brings together Women From 80 Countries to Report on Progress & Strengthen Networks The International Leadership Forum for Women with Disabilities was one of the most heralded, far reaching and successful events of 1997. Held June 15-20 in Washington, DC, the Forum attracted legislators, artists, advocates, organizational executives, trainers, international assistance experts and grassroots development specialists from around the globe. It was a success by all measures: · All the world's cultures and regions were well represented in the group of 612 participants from 82 countries and territories; · As a follow-up to the United Nations 4th World Conference on Women held in Beijing in 1995, the Forum served as an international progress report on concrete implementations of the Beijing Platform for Action benefiting the world's estimated 300 million disabled women and girls; · The Forum was the highest level event ever held that focused on the needs and achievements of disabled girls and women, attracting the participation of four U.S. Cabinet members, sponsorship of two United Nations agencies and three international organizations, and the support of more than 20 U.S. government departments and more than 20 corporate and non-profit organizations. Held under the Honorary Chairmanship of U.S. First Lady Hillary Rodham Clinton, the Forum received a letter of support from President of Ireland Mary Robinson and was addressed by Parliament members from South Africa, Finland, Tanzania and Uganda. · More than 50 training workshops, ranging from proposal writing to building wheelchairs, to using the Internet, to grassroots organizing were held. · Working through consensus, the Forum adopted a comprehensive closing statement outlining specific actions that need to be taken on international, national and grassroots levels to improve the situation of disabled girls and women in critical areas such as education, health services, employment and access to family and community life. The statement also demands actions to eliminate all forms of violence and discrimination against girls and women with disabilities. · Sponsored by the U.S. Department of Education's Institute for Disability & Rehabilitation Research, the Forum featured several research initiatives which engaged the participants in identification of priorities for future training and focus groups in areas such as education, violence, parenting, and development of role models and mentors. · Through a website and a dedicated team of volunteers provided by the NCR Corporation, the daily proceedings of the Forum were accessible to thousands of off-site participants via the Internet. Results In addition to the Forum Final Statement identifying actions to be taken, the Forum delegates agreed that: international meetings to further the progress of disabled women should take place at least every other year, rotating from region to region. The research conducted at the Forum identified five main areas for training, action and further investigation: 1) education; 2) economic empowerment; 3) ending violence against women; 4) access to health services; and 5) access to family life. Other issues identified by those interviewed that cut across all topics of concern included: 1) attitudes towards disabled people, especially women; 2) role models/mentors/peer education and the need for more visibility and connection among women with disabilities; and 3) networking and training in leadership. Program Highlights June 16: Aspects of Leadership On, Monday, June 16 there was a palpable sense of excitement in the room as Secretary of State Madeleine Albright and Secretary of Health & Human Services Donna Shalala, both veterans of the Beijing Conference, addressed the Forum. Albright announced new policies governing U.S. foreign assistance programs which will place disability issues "prominently on our development agenda with governments that receive our aid." She also described new initiatives of the Department of State to train disabled individuals for foreign service and to make U.S. embassies throughout the world accessible. To resounding applause, Albright bluntly stated, "If we Americans can export our strategies for selling hamburgers, surely we can export our strategies for meeting the needs and benefiting from the skills and strengths of people with disabilities." Secretary Shalala then delivered a heartfelt speech recalling why international actions, such as the Forum, are necessary: "Because when women with disabilities are denied access to fundamental rights and fundamental health care, including reproductive care, we need international action. When landmines, domestic abuse, genital mutilation and other forms of violence continue to tear at the lives of women around the globe, we need international action. And when prejudice, ignorance and other barriers stop women from getting the nutrition, physical activity and other tools they need to live full and healthy lives, we need international action." Kathy Martinez of the World Institute on Disability, Forum Director, challenged participants to use the week productively and positively, spending no more than 10% of the time describing how grim their situations are, and spending 90% of the time in defining solutions and identifying programs of excellence. Keynote presenters Maria Rantho, Member of Parliament, South Africa; Venus Ilagan, President of the Philippine Federation of Disabled People; and Petrona Sandoval, grassroots organizer from Nicaragua, then outlined the dynamic approaches disabled women are taking to improve their lives in Africa, Asia and Latin America. The leadership theme was further developed by Laura Liswood, who presented her unique video of interviews with women heads of state and government from around the world. Each President or Prime Minister gave her own sharply honed insights on the challenges, strengths and singular qualities of women's leadership. Liswood summarized that the wisest among them counseled that the vision for change always progressed from the unimaginable to the impossible, to the inevitable. June 17: Education & Development On Tuesday, June 17 Secretary of Education Richard Riley and his Assistant Secretary for Special Education and Rehabilitative Services, Judith Heumann, reported on the recent Congressional re-authorization of the Individuals with Disabilities Education Act, which ensures that no child will be denied an education because someone thinks he or she can't learn. Riley emphasized that, "this law makes sure that every young person has the opportunity to get the skills in order to live independently." Heumann, Co-Chair of the Forum, was concerned that other countries not repeat mistakes of the Western segregated education systems and instead should now work collaboratively to build accessibility and inclusion into their schools and universities and curricula. Marca Bristo, Chair of the U.S. National Council on Disability, reminded the participants how only 20 years ago when she and many of the women in the room were beginning their advocacy efforts, there was no recognition of gender issues in the disability field and how much they have achieved in the interim. Development assistance experts Brigitta Andersson of Sweden and Yukiko Nakanishi of Japan presented powerful overviews of their experience with programs to assist disabled people in developing countries to build services and organizations. Each stressed the actions which needed to be taken to strengthen the access of disabled girls and women to education and self-sufficiency. June 18: Health & Family Wednesday, June 18 was focused on Health & Family Issues and keynotes were delivered by Mary O'Hagan, a mental health advocate from New Zealand, Drs. Lesbia Solarzano and Lyubov Popova, physically disabled physicians from Nicaragua and Russia, and Marsha Saxton, a bioethics and genetic issues specialist from the USA. They stressed that disabled women as a group were uniformly denied access to reproductive information, sex education, motherhood and decision-making about operations, procedures and research performed on them. Saxton, recalling her childhood in a hospital, concluded," I wish I could go back in time and tell all the other disabled girls in the hospital about this conference, tell them that we will have the knowledge and power and connections and hope to offer each other someday." A unique part of the program was the series of "Ask the Doctor" seminars held Wednesday evening, featuring panels of disabled and non-disabled female physicians from several countries responding to questions from the floor. June 19: Employment On Thursday, June 19 Susan Daniels, Deputy Commissioner for Disability and Income Security Programs, U.S. Social Security Administration and Co-Chair of the Forum, opened Employment day with a rousing speech about the arguments often advanced by employers and business owners that "it is too expensive to accommodate people with disabilities." Her presentation emphasized the need to "challenge the obvious," illustrating how non-disabled people have expectations that their technological and everyday needs will be accommodated with chairs, lighting, microphones, etc., with no question of needing to justify the associated expenses. Pauline Winter of New Zealand then described her country's system of helping disabled people find jobs and training through a network of employment, as opposed to disability specialists. Evy Messell, International Labor Organization Senior Specialist on Disadvantaged Youth and Women, outlined the ILO program to support creation of job opportunities and income generation for disabled people, especially women, in developing countries. Workshops then provided opportunities for participants to exchange practical information about employment and income generating projects, including wheelchair building and making farming accessible. June 20: Technology & Media On Friday, June 20 the two themes were communication and technology. Keynotes were delivered by Rachel Hurst of England, Rina Gill of UNICEF/Bangladesh and Salma Maqbool of Pakistan on their projects and research to improve the image of people with disabilities in the mass media. The technology theme was ably developed by Katherine Seelman and Deborah Kaplan of the USA who emphasized the need for the government and advocacy groups to work closely and persuasively with industry to ensure that the new communication and information technology be designed and/or adapted to the needs of disabled people. Other Forum Activities Other activities that the participants reported back they had found particularly useful were: · videos concerning women's issues, especially "Women World Leaders," presented by Laura Liswood, and those illustrating disabled women as successful entrepreneurs, parents and community leaders; · regional caucuses for participants held in the evenings; and · a visit to a technology superstore with a special discount for Forum participants. The exhilaration and exuberance of the group, however, were most evident during Tuesday's Talent Night of dancers, comedians, singers, poets and performance artists, and during Thursday night's closing party featuring dance music from around the world. The Forum venue, the Hyatt Regency of Bethesda, added to the ambiance of the event by its provision of food from different regions of the world and by its constant attention to the needs of disabled participants. The Forum was organized jointly by the World Institute on Disability, Rehabilitation International and Mobility International USA. International Sponsors included the United Nations, the International Labor Organization, Rehabilitation International and Disabled people's International. More than 20 U.S. government departments financially and programmatically supported the Forum, including the Departments of Education, Defense, State, Health & Human Services, Justice, Transportation, Labor, Agriculture, the U.S. Social Security Administration, the U.S. Information Agency and U.S. Agency for International Development. The National Council on Disability contributed crucial coordination and management services. More than 25 private sector sponsors also contributed, including the Dole Foundation, Ms. Foundation, Very Special Arts, Paralyzed Veterans of America, the ELA Foundation, NYNEX/Bell Atlantic, the U.S. Council for International Rehabilitation and the World Bank. Information about Forum Follow-up 1) Follow-up actions to the Forum- Kathy Martinez, Director, International Division, World Institute on Disability, 510 16th Street, Oakland, CA 94612; Tel 510 251 4326; Fax 510 763 9494; e-mail kathy@wid.org 2) Forum products- Rosangela Berman-Bieler, President, Third Millennium Events, 711 Brent Road, Rockville, MD 20850; tel 301 838 3031; Fax 301 838 3029; e-mail RBBieler@aol.com ---------- CONSENSUS STATEMENT International Leadership Forum for Women with Disabilities Washington, D.C., USA - June 15-20, 1997 We the 614 women from 80 countries around the world at the International Leadership Forum for Women with Disabilities in Washington on June 15-20, 1997, are deeply encouraged by the emerging strength in the empowerment of women and girls with disabilities. We hereby want to send signals to all our sisters and brothers in the disability and women's rights movements. This important process is meant to include the possibility of growth of each and every individual woman and girl with disabilities worldwide. Consequently, we need partnerships with women and men in all walks of life. Our issues are among the top priority concerns of all human development. We believe that several concrete actions and considerations must occur regarding United Nations conventions and policies. Of specific importance are: · the Convention on Elimination of All Forms of Discrimination Against Women (CEDAW) · the United Nations Convention on the Rights of the Child · the Standard Rules on the Equalization of Opportunities for Persons with Disabilities and the promises within the Platforms for Action from the United Nations conferences and summit meetings. Especially we note that the positive effects of the 1995 Beijing Conference on Women are still vigorously ongoing. We want the Beijing Platform for Action to be fully realized. We also demand that our states ratify the conventions, removing any reservations and other barriers to implementation. Women in solidarity must unite and call for the stopping of wars and civil conflicts. Women and girls especially suffer the illnesses of poverty in wars' aftermath. Decision makers in countries affected by wars and conflict must take full responsibility to rehabilitate girls and women. We state the following: Human Rights & Violence We demand that the message of disabled women and girls be heard clearly in all debates and policies concerning genetic engineering, bioethics, prosthetic design and human engineering such as cochlear implants, abortion on grounds of disability, assisted suicide, euthanasia and all eugenic practices. Such issues vitally concern disabled women and men, and have the potential to violate our fundamental and universal rights. We demand that all violations stop. Further, we demand that women with disabilities participate in all levels of debate and policy development regarding reproductive research policies and programs. We urgently raise our concern to our governments about the the UN Educational, Scientific and Cultural Organization (UNESCO) draft of a Universal Declaration on the Human Genome and Human Rights to be finalized in July, 1997. We question the wisdom of the draft text in respect to the human rights of disabled persons. We recommend that the governments discuss the draft text with the organizations of and for disabled persons in their countries. We urge that international and national governmental and non-governmental organizations recognize the high rate of violence against disabled women and girls as a critical health and human rights issue in policy and legislation. Legal enforcement of assault and sexual abuse laws should be strengthened, including severe punishment of offenders and support for victims throughout the justice system. We cannot accept that family members, paid and volunteer care givers, institutional staff, police, and even friends, are humiliating, assaulting, raping, exploiting, neglecting, forcibly isolating, withholding assistance, medical care or supports, abandoning, disposing of, putting out to beg, selling and even killing, women and girls with disabilities at alarming rates. Disabled children of battered mothers are particularly vulnerable to abuse. We urge that effective support be developed for victims and family members. We request that the UN Special Rapporteur on Violence against women address violence against women and girls with disabilities as a pressing issue, in full cooperation with women with disabilities and their organizations. We request that disability organizations include the issue of violence among their priority concerns. We request the world's women's movement acknowledge the vicious insults visited upon women and girls with disabilities the world over, and take steps to improve solidarity among all women. We demand immediate action to build access to information and services to escape, heal and survive abuse, all steps to preventing future cycles of violence. We protest in solidarity with disabled women in all countries, where: 1) laws currently allow legal abortion only for the protection of the mother's health, 2) in the case of pressing economic circumstances, and, 3) in cases where the fetus is disabled. We demand that decision makers acknowledge the right of disabled women to choose for themselves. We also refer to the text in the Beijing Platform for Action. Education Poverty and disability among women and girls are closely linked. We demand effective access to education and employment as the primary tools for fighting poverty. We urge that education be used as the primary key for girls and women to be able to lead integrated and participatory lives in their communities. We demand that decision makers include the education and skills development of girls and women with disabilities as an integral part of the educational system. Language and communication skills development are especially important in those countries where the use of several languages is practiced. Sign language education and development should be promoted. Similarly, blind girls and women should have the opportunity to learn Braille and other skills to enable literacy and communication. Local culture should be allowed to provide opportunities for girls and women to be recognized as full participants in meaningful social and economic roles. We urge that both parents and teachers of girl children with disabilities receive further training in order that the quality of overall education be raised. We also urge that teacher training curricula include a disability component. We demand that education provide effective opportunities for girls and women with disabilities to become empowered. The need has never been higher for organized women's groups to provide effective role models so that girls and women can take up leadership roles, increasing their self reliance. We urge the development of mentoring programs for girls and young women with disabilities and demand the inclusion of positive images of women and girls with disabilities in the media. Employment We demand that existing economic inequalities between women and men be equalized, and that the economic contribution to the society by women with disabilities be recognized. Women with disabilities should be afforded full support to pursue their ambitions and skills development regarding the use of their capabilities to support themselves and their families. We urge that women with disabilities be encouraged to establish micro enterprises, for example, in the development of marketing devices, sales representatives, catalogues, etc, to bring the goods/products of other disabled women to market. Banks should recognize the multiple value of giving loans to women' s business enterprises. Governments must recognize the efforts of women engaged in micro enterprise development with tax credits and other appropriate benefits. We demand that world commercial communication groups present in their programming positive examples of women with disabilities in their businesses. Health Care Because of the discrimination and ignorance of medical professionals and extreme poverty, women with disabilities do not have the same access and opportunities for health care as their able-bodied counterparts. The power of health care professionals, particularly in the mental health and developmental disabilities arenas will not be given up easily. Disabled women are dying prematurely as a result of not getting the care we need. Disabled women do not receive adequate personal assistance, assistive technology and supports because of lack of funds. Therefore we demand that: 1. Women take power and control over their own health care, including having the choice of what medical tests and treatments they wish to have. Parents of disabled girls receive full information on the outcomes of medical procedures so they can give informed consent. 2. National Health policies and bureaucracies be accountable for improving the access, availability and affordability of high quality, culturally appropriate health care for disabled women and girls. 3. Schools for health professionals offer affirmative action to students with disabilities and include adequate training on the needs of women and girls of disabilities, including community-based rehabilitation and reproductive education. 4. Adaptive equipment, appropriate to local conditions, be developed Studies be launched to evaluate the outcomes of medical procedures from the point of view of people with disabilities. Multidisciplinary health and medical care and research be done to provide a more holistic picture of gender specific impairments and diseases. 5. Disabled women be trained to be the leaders in research on disabled women's health care needs. 6. In war torn areas quality field-based health services be provided for disabled women and girls. 7. All countries insure that rehabilitation services are available to disabled girls and women without sexual bias. Sexuality Disabled women internalize the mythology of asexuality. Disabled women have internalized the notion that our bodies are not worthy to be loved. Many woman and girls are extremely lonely and touch deprived. We want a disability sexual culture focused on our entitlement to pleasure and love, understanding the advantages of possessing bodies and functions different when compared to women's majority culture. We urge that: 1. Women have a safe and private place to discuss with each other their sexual lives, desires, hopes and questions. 2. Disabled women and girls receive accurate information about sexuality, including training to publicize the good word that all disabled women are sexual and sexy and can give and receive love making in a variety of ways. 3. Disabled women be educated to work in women's health services, including training as sex educators and leaders in research on disabled women's sexuality. Communication & Technology & Accessibility We demand an end to the systematic denial of disabled women to appropriate information and mainstream lines of communication. We demand that there be guidelines: 1) to ensure that disabled children and adults of both sexes are integrated into mass media programming, including advertising; 2) these portrayals must be positive, sensitive and life enhancing. This includes public education campaigns designed to prevent disability, such as immunization. We demand that all technical methods of communication are designed for universal use by disabled and non-disabled persons. We urge that the communications and information needs of disabled women who are poor and have not received an education are given a higher priority. UN Conventions We further believe that the United Nations and our countries should intensify efforts to implement all existing conventions concerning disabled women and girls. Such actions should be effectively overseen by the United Nations bodies responsible for monitoring of these instruments, together with the non-govern-mental (NGOs) organizations concerned. Special cooperation should be established between the units responsible for disability, gender, human rights and NGO issues. Such actions should be applied at the local, national, regional and international levels. We urge the United Nations and other relevant bodies to take immediate action regarding: · informing about the existing conventions using easy-to-read language, accessible formats and local languages · initiate the building of new knowledge with respect to women and girls with disabilities using surveys, research and case studies · encourage the development of dialogue with decision-makers at all levels · facilitate the co-sponsorship with NGOs of seminars dedicated to training of women and girls with disabilities about methods to implement policy and to take up decision making positions. Affirmation We hereby reaffirm the establishment of a global sister network among women and girls with disabilities. We affirm our membership in WILD- Women's International Linkage on Disability. Washington, D.C., USA, June 20, 1997 ---------- MIUSA'S FINAL REPORT Women's Institute on Leadership and Disability Eugene, Oregon, USA - June 1 - 14, 1997 Loud, Proud and Passionate! was the rallying cry of 32 women with disabilities who participated in Mobility International USA (MIUSA)'s International Leadership Institute for Women with Disabilities, in Eugene, Oregon, from June 1 to 14, 1997. Grassroots organizers, teachers, journalists, writers, physicians, students, and mothers, Leadership Institute delegates came together to exchange experiences and build skills and strategies to counter the double discrimination faced by women with disabilities, which results in illiteracy, unemployment, poor health, isolation, disenfranchisement, and lack of leadership opportunities. By Mobility International USA The Institute was held as an intensive training opportunity for selected women prior to their participation in the International Leadership Forum. Focus on Solutions Using the model developed by MIUSA over 16 years of international exchange and leadership training, the Leadership Institute curriculum was a non-stop combination of seminars, challenge and team-building exercises, and cultural activities. In seminars on topics such as leadership issues, organizational development and funding, sexuality and reproductive health, addressing violence, deaf culture, income generation and employment, using the media, advocacy through policy and legislation, and using the Internet, delegates explored ideas for facing problems, practiced skills, and exchanged resources. Through outdoor and physical activities such as aerobics, sports, camping, swimming, and dancing, delegates challenged preconceived limitations and experienced the expanded possibilities of women with disabilities working together. Based on recommendations from grassroots disabled women leaders from around the world, the Leadership Institute focused on working toward positive, practical solutions. The goals of the Leadership Institute were: · to provide opportunities for delegates to share resources and strategies to empower women with disabilities throughout the world, and · to create a system for communication to exchange information, technical support, and mutual encouragement between women with disabilities who are working for positive changes in their communities and countries Diversity: Who Says We Can't Work Together? "For the first time in my life, I have felt secure in giving my comments. In other conferences, I have never felt that my comments were important." Leadership Institute delegate. MIUSA welcomed delegates to the opening session by introducing the first of many challenges to the group: how to create cohesion and ensure equal participation among a group of individuals reflecting the diversity of the world in language, culture, and disability. Delegates represented Australia, Bangladesh, Brazil, Canada, France, Guatemala, Indonesia, Palestine/Israel, Kenya, Malawi, Mauritius, Mexico, Nepal, Nicaragua, Philippines, Romania, Russia, South Korea, Thailand, Uganda, USA, Uzbekistan, Vietnam, Zambia, Zimbabwe. They used over 20 spoken languages and four sign languages. Among this new sisterhood were women who are blind, deaf, have low vision, are paraplegic or quadriplegic due to polio, spinal cord injury, arthritis, or muscular dystrophy, have amputations of leg or arm, walk with crutches or canes, or are of short stature. Our first team-building experience was to make a group commitment to ensure full communication and equal participation by all the women at the Leadership Institute. Everyone pitched in. Creative and flexible systems for communication soon emerged, incorporating shifting seating arrangements and various combinations of interpreters and delegates mixing Spanish, English and Russian verbal translation, lip-reading, and sign language interpreting. The experience was eye-opening for many participants who had little previous experience with cross-disability, cross-cultural collaborations. Innovations One of the most exciting aspects of the Leadership Institute was learning about the innovative solutions women with disabilities are finding to address problems of women with disabilities in their countries. Working in small groups, each delegate proposed a specific project to benefit women with disabilities, and received feedback and practical suggestions from her group members. It was no surprise that "funding" was among the most commonly mentioned difficulties, and women offered strategies for carrying out projects with little money, or for identifying creative sources for funding. In a seminar on proposal writing facilitated by Corbett O'Toole of the Disabled Women's Alliance (USA), delegates distilled the goals and needs of each project to concise one-page descriptions to present to potential funders. Some of the projects presented by Leadership Institute delegates included: · Revolving Loan Programs for women with disabilities in Southern Africa · training program for women with disabilities to become sign language interpreters and teachers of Braille and mobility and orientation in San Luis Potosi, Mexico · secretarial training program for women with disabilities in Nepal · Grinding Mill project to generate employment and income for women with disabilities in Zimbabwe · English and computer training for women with disabilities in Vietnam; · a Bakery run by women with disabilities in Guatemala; · Leadership training courses for women with disabilities in France, Romania, and for minority women with disabilities in Canada; · center for women with disabilities in Korea · vocational training centers for women with disabilities in East Jerusalem E-Mail Activism: Using the Internet "For the first time, I have knowledge of how e-mail and computers work. When I go back home, I will go for training. No one will this time tell me that I can't use computers because I have one hand. I know now that I can do it." Leadership Institute Delegate. Maureen Mason, of the Institute for Global Communication's WomensNet, presented a day-long workshop on using computers and the Internet for international communication and activism. In the morning session Maureen introduced the Internet; basic use of e-mail and the World Wide Web. Mike Thomas, a trainer for the Oregon Commission for the Blind, demonstrated adaptive equipment for people with visual disabilities. Delegates with and without visual impairments were enthusiastic about the potential of this technology for increasing participation of blind women in networks of communication. Initial shock at the price tags of the equipment was countered with a flurry of ideas for sources of donations and fund-raising. In the afternoon, delegates broke into small clusters for intensive training and hands-on practice in using e-mail, browsing the Web, basic Web page design, and desk-top publishing. The day concluded with a strategy session on how to stay in touch in order to maintain this network of women with disabilities after the Leadership Institute. Delegates were enthusiastic about the relatively cheaper cost of e-mail for communication, since much of their work is currently done by phone and fax. However, many women pointed out problems such as lack of equipment, unavailability of technical support and unreliable telephone lines as potential barriers to using email. The group proposed a system of communication using a combination of e-mail, fax and postal mail, in which each organization or individual takes a role in the passing of information depending on technical and financial capacity. Ropes Challenge Course " The Challenge Course gave me insight into how much strength comes from trusting others for support - physical, mental, emotional. As a leader, this is really important for me, reminding me of how strong I am when with other women with disabilities." Leadership Institute delegate. On a rainy afternoon, delegates ventured into the Oregon woods to undertake what many would later describe as the most transformative experience of the Leadership Institute. The Ropes Challenge Course is an intensive workshop in which participants use teamwork and strategy to accomplish a series of physical challenges. In small teams, delegates worked together to move every woman over a 10 foot wall, to cross a rope bridge suspended from one 20 foot high platform to another, and to reach a target while "flying" blindfolded, suspended in the air. Women pooled their various strengths, props and creativity as they climbed, boosted, hoisted, and directed each other to reach their goals. Tableaus were framed: at "The Wall", arms reaching down to a woman ascending a pyramid of other women, crutches becoming ladders propped on arms of wheelchairs. At the "Flying Angel", a women suspended in the air, signing directions to her comrades below to shift the counterbalance of her ropes as she stretched to reach her target. On "The Bridge", a woman who walks unevenly with canes on solid ground, hesitates on a platform high in the air, then, responding to the encouragement of her team and her own determination, moves forward on the ropes between trees. Every woman, with the help and encouragement of her colleagues, went up and over the obstacles which on first assessment seemed insurmountable. As one Leadership Institute delegate described the experience, "The Challenge Course reminded me that challenging things are not always impossible to overcome and teamwork is very important." The Challenge Course and other physical activities had another kind of powerful impact on the Leadership Institute delegates. Many activities, including swimming, rafting, camping, wheelchair basketball and aerobics, were "first experiences" for these accomplished women, and contradicted the limitations which had been imposed on them, not only by other people but by themselves. One woman described, " I had always wanted to climb trees, go swimming, and do river rafting. So protective of me, my family often discouraged me to do things. After these experiences, I'm more daring and independent. I am more aware of my capabilities as a woman with a disability". Another woman stated: "This experience was an eye-opener to me because I participated in most of the challenging courses which non-disabled people think that we can't do. So when I go home I will participate fully in the challenging activities and I will encourage women with disabilities to change their attitudes toward themselves." Activism for Change: Rights, Laws, and Organizing "I gained insight into what it means to challenge internalized oppression. Regardless of what is stripped from us, we can always maintain our dignity." Leadership Institute Delegate. "I was so lonely before I came here. Why? Because there were no people who understood my vision for a movement for the rights of women with disabilities" Leadership Institute delegate Mary Lou Breslin and Pat Wright of the Disability Rights Education and Defense Fund (DREDF) opened the workshop on Activism for Change with a discussion of the power of action rooted in a "Rights-bearing Attitude". They spoke of the importance for women with disabilities to find common ground in shared experience, to overcome differences and work together, using every woman's strengths, and to be persistent in the face of barriers. As consulting session was held where delegates served as advisors for three of their members, Venus Ilagan (Philippines), Susan Chitimbe (Malawi) and Kim Mi Yeon (South Korea). Each "client" presented a brief outline of the goals and activities of her organization, and asked for help from the "advisors" in dealing with a problem or difficult situation. The room rang with the collective wisdom of 40 women of different countries. Women shared strategies for stretching grant funds by creating self-sustaining projects, which teach skills to women with disabilities while generating income through products or services. "Consultants" encouraged their sisters to persevere in efforts to develop organizations run by women with disabilities, and offered political strategies for creating successful women's organizations while maintaining necessary relationships with male colleagues and politicians. Responses were especially charged to the universal problem of securing loans for business ventures by women with disabilities. Around the world, women with disabilities continue to be considered bad credit risks, or not seriously considered at all, in spite of steps such as certified loan management and business training programs, and collateral funds for women with disabilities. MIUSA ventured a proposal: women with disabilities need our own bank. Can we create an International Women with Disabilities Loan Fund, managed by and for women with disabilities?" The response was resounding: let's do it! Organizational Development and Funding "I am encouraged. I will take more opportunities for fundraising. I will begin my new life as an activist of women with disabilities movement" Leadership Institute Delegate. Creating and sustaining organizations, fundraising, and micro-credit were high on the agenda of a two-day seminar on organizational development and funding. Laurie Laird, of the Global Fund for Women, advised women on the process of applying for funding, starting with learning about the funding organization - what kind of projects they fund, their guidelines-before approaching them. She advised that developing a relationship with the funder is crucial, and recommended that organizations begin by submitting a modest proposal, and by involving a more well-known organization as a "counterpart" if the applicant is a new organization. Kicki Nordstrom, Coordinator of the Women's Committee of the World Blind Union, offered insights and a publication on starting organizations of women with disabilities, and suggested a number of resources for funding. A workshop with Jenny Kern and Jan Sing of Whirlwind Wheelchair Women of the Wheeled Mobility Center began with a demonstration of basic wheelchair building techniques, and evolved into a discussion of the business of wheelchair manufacturing, how to train women with disabilities to be technicians and business women, and how to make a business successful. Geoff Davis of the Grameen Foundation described the concept of village loan programs, in which small groups of women are granted small loans to start businesses, and share the responsibility of repayment. Delegates shared their experiences with micro-credit programs, asked many questions about starting loan programs in their communities, and continued to explore possibilities of creating an international revolving loan fund, based on the village loan concept, run by and for women with disabilities. Geoff described some of the key ingredients of successful programs, including business and technical training for the loan participants. Leadership Institute delegates organized a working committee to follow up on the loan fund idea. Moving Forward "After the MIUSA Leadership Institute, I'll never be the same again. I'm more daring and independent. I'll share these new experiences with other women with disabilities. My organization will see a new woman, a daring and passionate woman". Leadership Institute delegate As they prepared to leave Oregon, women with disabilities from around the world shared the new goals that they carried home, and the steps that they planned to take to move toward them. Some women described ideas for conferences on leadership training, violence against women with disabilities, women's and disability rights, or health issues. Others described plans to create organizations, support groups and newsletters, by and for women with disabilities, including cross-disability groups and groups of Deaf women. Several women were excited about incorporating experiential or physical activities into programs for women with disabilities. Media campaigns were planned by delegates from several countries. MIUSA agreed to work with women with disabilities on the creation of a revolving loan fund, and to help initiate a fax, post and e-mail correspondence system. MIUSA also sent five donated, retrofitted computers and monitors home with Leadership Institute participants who had no access to computers, to ensure that women have the means to maintain communication and mutual support. (Another 10 computers will be ready and sent to delegates in the next few months.) As the Leadership Institute drew to a close, Leadership Institute delegates and MIUSA staff prepared to fly to Bethesda, MD, to participate in the International Leadership Forum for Women with Disabilities. Most Leadership Institute delegates took high profile roles at the Forum, as workshop convenors and presenters, including Venus Ilagan, who served as Keynote Speaker representing the Asia Pacific region. Lasting Effects In the last days of the Leadership Institute, delegates took stock of their accomplishments. Some were tangible, including the compilation of autobiographical essays and photographic portraits of Leadership Institute participants (to be edited into a book ), two issues of a newsletter written by teams of delegates, and a videotape, with women with disabilities on each side of the camera, documenting personal accomplishments and offering motivation and support to other women and girls. Based on responses from the delegates, the Leadership Institute accomplished its goals: to empower women with disabilities by providing opportunities for exchange of strategies, information and resources, and training in practical skills. Reflecting on their experiences in the Leadership Institute, women with disabilities described themselves as feeling more confident, less isolated, and more equipped with skills, information, resources and ideas to do their important work at home. As one Leadership Institute participant summed it up: "The best time of my life was during this two weeks of training. I understand and felt really understood in a group of women with similar experiences to mine. Even though our cultures and languages are so different, I learned that our challenges, objectives, and dreams are the same, and I will not feel alone ever again." Thanks MIUSA wishes to thank the many contributors who made the Leadership Institute for Women with Disabilities possible: the WK Kellogg Foundation, The Dole Foundation, the US Information Agency, the Open Society Institute, National Institute on Disability and Rehabilitation Research of the US Department of Education, the Western Regional Resource Center, Travel Team, Comsource, NCR Corporation, the Lane Transit District, Hilyard Community Center, KLCC Radio, Womenspace, the All Women's Health Service, and the many organizations, businesses, families and individuals who generously contributed to the Leadership Institute. ---------- MADELEINE ALBRIGHT Remarks by the U.S. Secretary of State All women, whether we have disabilities or whether we do not, are ready to claim our rightful place as full citizens and full participants in every society on Earth. Ours is a unifying vision, based on the truth that in our era, security, prosperity and freedom are not finite, nor are they the rightful property only of some people in some places. If we plant the seeds and till the soil, those precious commodities will grow. And more and more people in more and more countries will become beneficiaries and contributors to our global community. To that end, I am very encouraged by the work the organizations sponsoring and participating in this conference have done and are doing to advocate, educate and lead. You are doing an outstanding and important job. But as I am sure you agree, there is a very long, long way to go. Marginalization There are more than three hundred million women with disabilities in the world. In many societies, they are consigned to the margins-not admitted to schools, rejected by employers, denied access to health care. We cannot afford this loss. We need your strength and skills. If we are to build the kind of future we want, women with disabilities cannot be marginalized, women and girls with disabilities must be empowered. This morning at this historic conference, I assure you that I will do everything I can to see that America does its part in advancing our common agenda. First, closest to home, I want to see a State Department and foreign service that is truly open to the talents of all. Spurred on by Deidre Davis, the Deputy Assistant Secretary of State of our office on Civil Rights, we have eliminated barriers to full participation. I have been told that a record number of individuals with disabilities took our foreign service exam last November, and that 146 passed. I look forward to many of them joining the foreign service, and I encourage any of you who are eligible and looking for an interesting change in career to consider taking the exam, as well. Second, as a matter of policy, the United States can and will be telling the story worldwide about what we have been able to do here through our knowledge of rehabilitation, the strength of our civic organizations, the liberating nature of our technology and the justice of laws such as Americans with Disabilities Act. After all, if we Americans can export our strategies for selling hamburgers - surely we can export our strategies for meeting the needs and benefiting from the skills and strengths of persons with disabilities. Third, the connections between poverty and disability, between maternal health care and preventing disability, and between community-based rehabilitation and independence for disabled persons are not widely understood. But there are many who do understand at USAID, in the Peace Corps, in UN organizations and programs and in the PVOs that support economic and social development worldwide. Their challenge is finding the resources they need to keep us all moving forward. As Secretary of State - I hate to tell you this - I don't have a blank checkbook, but I do have a bully pulpit. I will do my absolute best to make the case on Capitol Hill and around America that by helping these organizations, we give a hand to friends everywhere, we honor our values and help secure our own future. Landmines Fourth, we have the problem of landmines. We must do more to cleanse the Earth of their pernicious presence. We must do more to rehabilitate and provide for full entry into society of the victims. And we must negotiate an agreement that will end forever the danger landmines present to women and children around the globe. As long as I live, I will never forget my trip to Angola. I don't think I've ever seen so many injured people as I have in Angola. And when I went there, out into the villages, to see children tethered to their houses so that they would not escape into the fields to get blown up by landmines. Landmines are a scourge, and we call on all of you to help us in this very, very important issue. Violence Fifth, here in the United States, our top priority in implementing Beijing has been to halt violence against women. That is also a goal of American foreign policy; because the truth is that today, around the world, appalling abuses are being committed against women and women with disabilities. These abuses range from domestic violence to dowry murders to mutilation to forcing young girls into prostitution. Some say all this is cultural and there's nothing that can be done about it. I say it's criminal and we each have a responsibility to stop it. Finally, I will say to you now what I said to you in Huairou. It is past time - way past time - for the United States to ratify the Convention on the Elimination of all Forms of Discrimination Against Women. Here in the United States, the Americans with Disabilities Act has made us a leader in promoting full participation by persons with disabilities. But a year ago, when the National Council on Disability issued a report asking whether our foreign policy had a coherent approach to disability, the answer was no. This is not an acceptable answer and, fortunately, it is not an answer that will remain accurate for very long. New U.S. Policy Within a matter of weeks, USAID will be issuing a new policy and action plan on disability and development. That document will express the agency's commitment to reach out and include persons with disabilities in its programs and place this issue prominently on our development agenda with governments that receive our aid. The new policy is based on a recognition that people with disabilities have the same need for food, health care, shelter, education and training as others, but are often denied access to programs that meet these needs. The solution is greater foresight, wider consultation and better planning. There is no reason on Earth, for example, why a child with disabilities should not be able to sit in the same classroom, learn the same skills and dream the same dreams as her or his fellow students. There is no reason on Earth why an adult with disabilities should not receive the same help in starting a small business or learning a trade. There can be no excuse for failing to take access into account when constructing shelter or designing a community center or developing a source of potable water. The lesson we should all have learned by now is that the best way to prevent barriers to access is not to erect them in the first place. In this connection, let me say it to you before you say it me. Far too many U.S. embassies remain insufficiently accessible to persons with disabilities. I have asked our Office of Civil Rights and our Office of Foreign Buildings to produce a plan to correct that wherever we can as soon as we can. And I can promise that when the U.S. Government builds a building overseas, that building had better be accessible to all, or they will owe an explanation to me as Secretary of State. Since Beijing, we have moved forward and we will continue to move forward as long as conferences such as this and people such as you continue to reach out to each other and to challenge societies and governments to do the right thing. That is your job. It is the job of governments to create a basis in law and in the community to remove obstacles to the full participation of women and of persons with disabilities in the economic and social life of their nations. At this conference's center, and at the heart of the disability agenda, is the simple premise that every individual counts. That is the philosophy of America at its best. And that has been the motivating force for the movement to advance the status of women and women with disabilities for longer than any of us have been alive. This philosophy is not based on any illusions. Advocates of social progress have seen far too much of hardship and heartbreak to indulge in sentimentalism. But we live in a nation and a world that has been enriched beyond measure by the survivors, by those who have overcome obstacles to build platforms of knowledge, understanding and accomplishment from which others might advance. It has been said that all work that it is worth anything is done in faith. While respecting our diversity and building our unity, let us all keep the faith that our persistence and dedication will make a difference; that every friend transformed by our caring, every life enriched by our giving, every soul inspired by our passion and every barrier to justice brought down by our determination will ennoble our own lives, inspire others and explode outward the boundaries of what is achievable on this Earth. Towards that end, for all you have done, I salute you. For all that you will do, I admire you. And for your attention and kindness this morning, I thank you very, very much. ---------- BIRGITTA ANDERSSON International Development Assistance & Disabled Women Birgitta Andersson is the Chairperson of the Swedish Organizations of Disabled International Aid Association (SHIA) I have had the pleasure to chair the board of SHIA for six years. SHIA stands for Solidarity, Humanity, International Aid, with the subtitle - Swedish Organizations of Disabled International Aid Association. SHIA is an association established to coordinate development cooperation between Swedish organizations of the disabled and sister organizations in developing countries. I am also the president of DHR, The Swedish Federation of the Physically Disabled. Disabled Women's Network To be able to stimulate and strengthen the participation of women in the Swedish organizations of the disabled we, women with disabilities, have initiated a network. Today I am proud to tell you that nearly 50 percent of the leaders of the national organizations of the disabled are women. SHIA SHIA, was founded in 1981 by 14 different organizations of disabled in Sweden representing all major disability groups. At the start SHIA was a small organization with limited activities. Today, all together, SHIA is conducting more than 60 projects in 18 countries in Asia, Africa and Latin America The main objective for SHIA is to support organizations of persons with disabilities in developing countries and to participate in development programs/projects aimed at improving the situation for persons with disabilities in these countries. To achieve this SHIA uses different strategies but the core of the activities is our operative development support. We divide our development programs and projects into three main categories; organization support, rehabilitation and education. An other important role played by SHIA is awareness raising. The objective is to influence different organizations and institutions in the development field to identify persons with disabilities in their work, and to increase the quality of the support, mainly by making sure that persons with disabilities and their organizations have a major input in the activities concerned. During more that 15 years experience of supporting people with disabilities and their organizations we had realized that mostly men benefited from our support. Men were leading the organizations and therefore decided what should be on the agenda. It is obvious that men's priorities often are different from women's. Through my engagement in SHIA I have been involved in many fascinating meetings. Let me tell you about a group of visually impaired and physically disabled women that I met in Ghana. We sat together discussing common experiences concerning the conditions of being a woman with a disability. We talked about the everyday struggle - about how to support oneself, to raise a family, and how to cope with the prejudice in our surroundings. They were colorful, beautiful and talented women. I was very impressed by them. Then I asked them what they considered most difficult in being a disabled woman. They answered quickly - to be considered not good enough as a woman, wife and a mother. Lack of Influence In many organizations women were lacking influence. Even if some organizations had formed separate women wings, the male leaders made sure to keep their influence by placing family members such as wives or sisters on leading posts of the wing. To be able to put forward a strategy that could make sure that also women would benefit from the support given by SHIA, a special women committee was appointed. The committee started to work by conducting a survey among women in the organizations cooperating with SHIA. The survey was compiled in a report "The situation for women with disabilities in countries cooperating with SHIA " in 1994. In this report the women clearly express their situation and point out areas of special concerns. These areas are: ? The right to an income, ? The right to education, ? The right to family life, ?? The right to participate in organizations of the disabled. The report radically increased the awareness among SHIA´s member organizations and made them take concrete action. Today about one third of SHIA´s 60 projects contain support directed to women with disabilities. Women's Priorities For most women the first priority would be to be able to support themselves and their families. Many projects directed to women therefore contain measures to address this aim. Different kinds of micro credits have shown to be a successful way to create income possibilities. It has also been proved that if women are playing a key role in conducting and implementing micro credits, it is a guarantee for success. The second priority of most women is to get access to education. This can include basic education, higher education or vocational training. We know that a vast majority of women with disabilities in developing countries are refused basic education. It is a challenge to provide education, especially aiming at adult women with disabilities. Through our experiences we have found that education as a component in community based programs can be very successful. The community based approach is a possibility to provide education or vocational training close to the women. This enables these women to combine education and training with house hold duties and family life. Then the fight for education becomes easier. In many cultures, it is seen as impossible for a woman to leave home and travel on her own to work or study. If she has a family of her own it is even harder. Another example where we try to provide education on women's condition is in Argentina. SRF, The Swedish organization of visually impaired, is supporting a "mobile school" that can provide basic education to visually impaired women. By making the school mobile more women will be able to attend and benefit from the project. The third priority I think differs between individuals but for many women it is important to increase their influence and their possibility to act and speak for themselves. Early Discrimination It is important to remember that discrimination and exclusion of women with disabilities start in early childhood. Mrs Gertrude Fefoame involved in the SHIA project in Ghana has described the situation as follows: - A girl and a boy child are valued from different criteria. A boy is valued from his production capacity while a girl is valued from her capacity to reproduce. When a child is born with a disability this hits hard on both boys and girls. Even though it is hard it is often possible to convince parents that the boy with some practical help and training will be able to produce, to earn a living, even though he has a disability. But to make the parents envision their disabled girls as a capable mother and a wife is very difficult. This fact limits the value of a disabled girl child dramatically and we know that many disabled girls will not survive. The World Bank has said: - To support a woman is to invest in a whole family, to support a man is to invest in one person. I believe these lines contain an important truth. To achieve a sustainable change for women with disabilities we have to start working and supporting the children. As I said we have realized that supporting the organizations of disabled does not automatically benefit women. This also goes for children with disabilities. Disabled children are often not offered membership in the organizations of the disabled and therefore have very limited possibilities to speak for their rights and needs. By our efforts to strengthen women with disabilities we believe we will also strengthen the role of children in the organizations. Support for Village Women From the experience of SHIA we have examples showing that support channeled through women is often used and spread efficiently. One of the local branches of my own organization, DHR, is giving a small support to a group of 200 women in four villages in a rural area of Tanzania. Out of a very limited economical input the women have managed to give both some practical support to women with disabilities and to start up revolving loan funds that will give the women a possibility to earn an income to support their families. The project has also mobilized the women who are now much more active in their communities. Activities like the project in Tanzania can act as important kick off for other measures in order to strengthen women with disabilities. SHIA is actively supporting exchange of experiences among our partners in developing countries. As they are working under similar conditions they can give an important contribution to each others work. SHIA is trying to empower women from our cooperating partners by giving them the chance to speak for themselves. An example of this is the SHIA delegation of disabled women at the NGO Forum arranged in connection to the UN Women Conference in Beijing, in 1995. Breakthrough By quoting a few lines from our Beijing report I think I will give you a picture of what the presence of the SHIA delegation meant; "It was at the NGO Forum in Huairou and at the UN conference in Beijing, that we - women with disabilities - broke through and became visible. I do not think anyone returned from either the Forum or the conference without noticing our presence and the fact that we had been speaking for ourselves. We became a group to count on within the women movement. A group with the capacity to act, to participate and stand up for our rights." (Women walk on water). Many girls and women with disabilities go through life without any confidence. Nobody asks for their experience, their ideas or has any expectation concerning their capacity. Ms. Hema S. Nugghalli from India, who is also present here at this conference, was one of the participants in the SHIA delegation at the NGO Forum in Beijing In this role she was asked to prepare a speech concerning the situation of disabled women in India. When she told us how she went about to prepare this paper I thought it was a comprehensive example of empowering of women with disabilities on the grassroot level: To make sure she would give a true picture of the situation of disabled women Ms Nugghalli felt that she needed to consult disabled women living in the countryside or in the slum areas. Women who had not been active in any NGO. By word of neighbors and family members Mrs Nugghalli managed to identify a number of disabled women. She invited them to a meeting to share their experiences. Most of the women did not accept to come. They did not feel that they had anything to contribute with. It took a lot of persuasion, but in the end Ms Nugghalli managed to gather around ten women. After a hesitating start the women began to realize that they had a lot in common and that it was strengthening to share experiences. Apart from serving as the basis for an excellent presentation in Beijing this meeting also became an important starting point for the women involved. They decided to continue to meet and to start saving money to facilitate this. Standard Rules A last comment I would like to make concerning our strategy to support women with disabilities, is concerning the UN Standard Rules: Mrs. Chicu Mwalutambi, Tanzania, another of the delegates at the NGO Forum, talked very clearly about the importance of the Standard Rules. Her opinion is that the Standard rules radically have strengthened the status of disabled people in a global perspective. She says; - The fact that the UN has discussed and decided on a document stating the rights of people with disabilities is a great step forward. It is a future challenge for SHIA that together with our cooperating partners, to penetrate the Standard Rules from a gender perspective and to formulate a method to put them into practical use. Within this process it is important to also include essential statements from other relevant documents such as; the official report from the Beijing conference and the report from the Social Summit in Copenhagen. Other documents that must be used are the Convention on the Rights of the Child and the Convention of Human Rights. Women's Wings Most of the organizations co-operating with SHIA have separate women sections. Still this is not a guarantee for the influence of women. To achieve a sustainable result, the women issues have to be turned into "gender issues". By this I mean that there must be a consensus within the organizations that the women have as much as men to contribute and therefore need to be actively involved in all decision making. An interesting example of a woman's wing fully involved is in ENAB, Ethiopian National Association of the Blind. The women in ENAB have managed to organize a whole range of activities and to fund raise for them. One example is the wing arranged a show at the stadium of Addis Abbaba. In addition to bringing in an important economic contribution this also gave ENAB a lot of important coverage in Ethiopian media. In other organizations the women wing is more a product on a paper and the women struggle hard without receiving any attention from the male leaders. In some cases the women even discuss that the only way to achieve influence is to form a separate women's group. So far SHIA has very limited experiences of this kind of projects but it is an interesting discussion to follow. Capacity Building For the last two years SHIA has supported the capacity building within the women's structure of the international disability movement. The World Blind Union has carried out seminars in all their regions. The seminars led to the formation of regional women structures whose task are to support and mobilize grass root work among women with disabilities. SHIA has also supported seminars arranged by the World Federation of the Deaf and the international organization of deaf-blind people. Role Models There is a great need for role models in the work to strengthen women with disabilities. Therefore it is important to give women with disabilities the opportunity to develop their leadership skills. Women are needed as spokespersons both on central level and on local level. This is a basic condition to be able to mobilize women with disabilities. In Conclusion At last I would like to say that SHIA, and its member organizations, have gained a lot from our work to support women with disabilities. Personally I also feel that meeting other women with disabilities is an important contribution in my life. I have experienced many both personal and more general findings through sharing ideas and views with other women. This concerns the relation and communication between men and women but also our situation in society and the sometime hidden negative attitude we face in our daily life. Through the dialogue with other women I have also received much practical advice that has made my life easier. To enable a conference like this where we women with disabilities from all over the world have the possibility to meet is a great opportunity both for me personally and from the perspective of SHIA´s member organizations. Therefore I would like to thank you once more for the invitation. ---------- FRANCINE ARSENAULT Partnership: The Key to Growth Francine Arsenault is the Chairperson of the International Center for the Advancement of Community Based Rehabilitation and Past-Chairperson, Council of Canadians with Disabilities. As a woman with a disability I want to share with you some of the important things I have learned from my own life and from working with both the consumer movement of people with disabilities and the community based rehabilitation movement. My purpose is to bring to your attention the value and critical need for partnerships throughout the process of ensuring community participation for women with disabilities. To do this I will present some of the partnerships that have been critical in my own life and I'll extrapolate to highlight the pertinent principles of partnership. Family: The First Partnership The old saying goes that you can pick your friends but you are stuck with your family. Well, family is probably the most crucial partnership you will ever form and in my case I couldn't have picked better. My parents were very young but broad-minded and resourceful. When I contracted polio at eight months of age, they took the doctor's advice and put me in isolation for a month to protect my mother who was five months pregnant, my brother and the community whom they thought I threatened. When I was released to them, they immediately started to adapt their lives and my activities to make me an integral part of their world. They had virtually no training as to how to deal with me but they took each day as it came. They learned as they went along, they made adjustments and together we found ways of keeping me connected to my community. Critical to ensuring the potential of children with disabilities is the development of supports for parents. Community based rehab has focused to a large extent on providing information and support to parents of children with disabilities as a means of ensuring, not only the good health of children with disabilities, but to fight against attitudes that can isolate and devalue people with disabilities. To speak bluntly I am dismayed that the consumer movement of persons with disabilities has done so little in the area of supports to children with disabilities and their families. I offer to all of you a challenge to find innovative and empowering ways of assisting families with children with disabilities. The family is truly the most important partnership unit we will ever encounter. If this partnership is unhealthy the damage done can take a lifetime to resolve. Partnership Means Removing Barriers I grew up in a middle class Canadian neighborhood which included a Catholic school system. Few schools have been as open as mine was in sharing responsibility for me. My teachers worked hard to ensure that I could take part, as much as I was able, in all the activities of the other children. Between 8 and 18, I had 30 operations. This meant full co-operation was essential between my family, the medical professionals, hospitals, school staff, friends and other relatives, to help me achieve what others my age were able to do. For me to complete primary school, high school and college, those surrounding me had to be flexible, see my true potential and be prepared to remove barriers. The True Test of Positive Partnerships: Marriage In 1962, when I was 20, a French Canadian named Ric came riding into my life in an Austin Healey Sprite sports car. This partnership was an unexpected gift. He saw my scarred, limping body and I saw myself reflected in his eyes in a different way than I'd ever envisioned myself before. He took a chance I would fulfill his needs and I risked taking on a role most people felt I might not be able to successfully complete. Eleven months after our marriage, against the better advice of my doctors, I delivered an eight pound, eleven ounce baby boy to my ecstatic husband. Fourteen months later, our Kathleen was born. Our family seemed as large as we'd hoped but five years later the finishing touch, a golden second son was born. The rheumatic heart condition I'd developed after one of my polio operations became a pressing reason to end this fertility cycle. This phase of partnership succeeded by sharing expectations; each partner doing what they did best and taking responsibility for the results. Responsibility for Creating the Partnership: Parenting The partnership with my children gave great joy, anxiety, grief and satisfaction. Having three teenagers in one house at one time is hectic, fretful, awe-inspiring but never boring. They had been taught early to be independent because Mother refused her first instinct to be Super Mom. Her son's black eye at six for stopping a school chum from calling Mom a cripple, resulted in a realistic vision that Mother did have limitations, but she could do many things other mothers could not. This partnership now with a 32 year old son, 31 year old daughter and 26 year old son continues on a good footing because we listen and hear each other and remember the needs and expertise of each player. As a parent I learned the critical and necessary skill of beginning partnership. As a parent I was the one who had to take the initiative, I could not just sit back and wait for things to happen. Partnerships only exist because someone recognized first that they could not do it alone and second they recognized that someone had to get the ball rolling and it might as well be me. Partnership with Community Organizations As my family left the nest, I got involved in organizing "the Village Crafters", a group of 40 highly skilled women who met regularly to maintain the creative history of the village and develop the latent talents of those interested in my rural area. They remain together (twenty years later) because of a like-mindedness, for social interaction and respect for each others' abilities. After the Year of the Disabled in 1981, I was asked to join a newly formed advocacy organization for persons with disabilities. In the next ten years I had chaired local, regional, provincial, national and international boards of directors. The rules of partnership I had learned in the past served me well here. We learned to empathize with all disabilities and our organizations did not do things for disabled people but taught them to do those things for themselves. Part of the work I did nationally with the Council of Canadians with Disabilities involved being on a Board of Directors at the International Center for the Advancement of Community Based Rehabilitation (ICACBR) at Queen's University. This partnership is a multidisciplinary partnership in that its projects involve people with disabilities, health professionals, researchers, governments, non-governmental organizations and the communities. Community Based Rehabilitation (CBR) in India, Indonesia, Bangladesh and throughout the world looks at the prevention of disabilities, the early detection of disabilities and medical intervention into the lives of persons with disabilities. Our program expands to look at the socioeconomic integration of persons with disabilities. Our aim is to encourage the women who participate, whether they are parents of disabled children or disabled themselves to be involved from the planning of the projects, through the implementation, research and evaluation at the completion of the projects. It has caused enormous attitudinal change for families and the whole community. An example of this process is my friend Pikat. She has enlightened parents in Indonesia who assisted her (she has polio in one leg and uses a crutch) to get a university degree. She applied to be a coordinator of a CBR project that called for her to ride a motorcycle into hill villages and live there for a month to research the situation of persons with disabilities. Local mechanics put a third wheel to better balance her motorcycle and even though she fell off several times, she's inspired the village elders and families who have brought their disabled persons to be assessed. She now regularly visits 18 villages where she assists the communities to remove barriers to the participation. Being a good role model guides people to achieve their full potential. Partnership Principles I believe it is important for us to connect on a personal level but also to try and demonstrate the tremendous impact positive partnerships can have on our understanding of ourselves and on our ability to grow and prosper in the communities in which we live. However, for partnerships to be positive they must be governed by the following principles: • Partnerships must be open, willing to make adjustments and be based on trust. They must truly be a coming together to make things work and remove the barriers that prohibit participation and growth. • Positive partnership must focus on abilities. Yes, recognize the disability but focus on the ability. • For partnerships to grow we must be willing to take chances, not fear taking risks. • Partnerships must be truly equal, expectations must be shared as well as the responsibility for making things happen. • Listening is the key to a healthy partnership. • Respect for each other's abilities is critical. • Partnerships change, to remain static means to remain in the same place. Be prepared for partnership separation or cancellation. Be open to the formation of new partnerships. • Partnerships take many forms and may include multidisciplinary approaches including people with disabilities, non-governmental organizations, health professionals, governments, families and the community. • Partners must be included in planning, research, implementation and evaluation of projects. • Good role models help partners to achieve their goals. Our world is far from perfect for persons with disabilities, if it was none of us would be here. There is much work yet to be done. The most productive technique for creating positive change is not new. Critical to our success is the development of creative, inspiring partnerships. I encourage you all in your personal life as well as your work with community organizations to develop creative, growing partnerships that will enrich you and those you work with. ---------- MARCA BRISTO National Council on Disability Marca Bristo is the Chairperson of the U.S. National Council on Disability (NCD), a federal agency. When the National Council on Disability was developing and drafting the original Americans with Disabilities Act (ADA) legislation in 1986 and 1987, we were acting on our conviction that discrimination was the single greatest obstacle to full participation by people with disabilities: not severity of disability, not type of disability, not functional limitations imposed by disability, but discrimination. We knew that the programs and benefits which were available could only do so much. Rehabilitation, special education, and other support programs could only take us to the doorstep: a civil rights mandate was needed to open the doors. An accessible and inclusive society must be there, otherwise people with disabilities find themselves, as the saying goes, "all dressed up with no where to go." International Issues NCD has expanded the scope of its activities to include international human rights issues as they relate to persons with disabilities. For example, we drafted the first-ever United States-initiated resolution on disability policy before the United Nations and worked with the U.S. delegation to the UN Commission for Social Development to negotiate this resolution before 105 countries and to secure its passage through the UN General Assembly in December 1993. The resolution, entitled Positive and Full Inclusion of Persons with Disabilities in All Aspects of Society and the Leadership of the United Nations Therein synthesizes the application of previous, more general, UN documents regarding human rights to persons with disabilities. In addition, NCD worked to successfully amend and then pass the UN Standard Rules on the Equalization of Opportunities for Persons with Disabilities in order to reflect more progressive approaches to disability policies and programs. Promoting Civil Rights NCD's long history in promoting civil rights for people with disabilities around the world continued in March of 1995, when I participated as a U.S. delegate in the UN World Summit for Social Development. In fact, I was the first person with a disability to be a U.S. delegate at any summit. Since that time, the U.S. Department of State has designated NCD as the official point of contact within the U.S. government for disability issues. Policy Guidelines NCD believes that as the leading democracy in the world, the United States is in a unique position to advance progress toward democracy, equality of opportunity, and the full and valued social participation of people with disabilities on an international basis. Toward this end, the 1996 NCD Summit gathered disability rights leaders with international expertise to "take stock" of current U.S. policy and statutory provisions regarding people with disabilities in other countries in order to develop a more cohesive set of guidelines regarding the treatment of people with disabilities within the foreign policy arena. The U.S. Agency for International Development (USAID) is now developing a policy guidance entitled USAID Disability Policy and a second document, USAID Disability Plan of Action, which will guide implementation of the policy. This action is in part a response to recommendations in our 1996 report Foreign Policy and Disability. NCD also worked collaboratively with the U.S. Permanent Mission to the Organization of American States, other federal agencies, and non-governmental agencies to draft the Inter-American Convention for the Elimination of All Forms of Discrimination for Reasons of Disability, which was recently adopted. Thus, NCD is beginning to catalogue current provisions, analyze areas of congruence/disagreement, and develop recommendations for improved foreign policy and programmatic efforts in meeting the needs of people with disabilities on an international basis. Awakening to Action The road to equality of opportunity is a long one. But we must begin. We cannot afford not to. In his book, No Pity, Joe Shapiro describes how Justin Dart, Jr., one of the founders of the disability rights movement in our country, was awakened to action in the area of disability rights during a visit to South Vietnam in the late 1960's. It was in Vietnam that Justin first realized that not only were people with disabilities treated poorly, they were considered subhuman. Here, he was brought to an institution for young children with polio, the same condition that had caused his disability. Inside this metal shed 100 children had been left to die and to be buried in an unmarked field outside. Realizations like this have changed Justin and thousands of disability rights leaders forever. As the international movement of people with disabilities has taken hold, similar experiences have strengthened the ties between people with disabilities worldwide. Prejudice against people with disabilities and violations of their human rights know no national boundaries. Threat of Backlash How we in the disability community experience life today is quite different from the way we and our peers did only 15 short years ago. And most important, the attitudes toward our achievements have changed as well. On the one hand, we see new hope and a new understanding of what our potentials and possibilities are. However, on the other hand, as with other political and social movements, just when we seem to be at the brink of achieving our goals, there is a backlash that comes along to stop us. The post-euphoria period of ADA has been a deep problem for us here in America. We have not adequately prepared for the resistance we should have expected or the myths about ADA that have persisted. Leaders from other movements have taught us the lessons of backlash. Susan Faludi, a feminist author, refers to its subtle disguises. If we do not recognize them, they will divide and conquer us, breaking us up, pitting us against each other, isolating one disability group only to attack the next. We see that happening today. Old myths are remarketed as if they were new truths, and we return again and again to face the very attitudes we have been working so hard to dispel. Backlash is at its worst when it goes within, challenging the sense of self that we, as individuals and as a group, have worked so hard to achieve. When we turn the backlash against ourselves and begin to accept those discriminatory patterns, when we begin to believe that maybe we're asking just a little too much, we have to take a good, hard look at ourselves and each other. Your presence here today strengthens our vision of a new world order that brings people with disabilities into the whole circle of life. It is also a testimony to your belief that we ourselves can be a significant force for change. It is in feminist author Gloria Steinhem's words, "a revolution from within." Our Challenge That is our challenge today: to begin to paint a picture of where we want to be and to insist that, no matter what the odds, we will not give up. Eleven years ago, who would have thought that the Berlin Wall would fall, that Nelson Mandela would be released from prison, or that the Soviet Union would break apart? Only those involved in these visions and struggles would have believed that such outcomes could be possible. Nor can we rest on our laurels. Our journey is not over. It will not be easy. An early African-American civil rights figure, Frederick Douglas, put it clearly. "Power concedes nothing without demand. It never has and it never will." Last week I celebrated my 20th year as a person with a disability. Some people think it's odd when I use the word "celebrated" with regard to my onset of my disability. But I did. You, the movement, have taught me to love myself, my disability, and to be quite proud of it. With this pride we have accomplished great feats. Our challenge today is to teach the rest of the world to embrace us-to celebrate us, as we celebrate ourselves. Only then will we be able to build a true community. ---------- JANE CAMPBELL From Breakout to Breakthrough: 25 Years of Legislative Advocacy Jane Campbell is the Director of the National Center for Independent Living in England Introduction I have been in the business of 'advocacy' and 'change' for 17 years. My journey started as an isolated disabled woman desperately attempting to effect change from within a mainstream charity. Now I advocate from a position of strength within the UK Disability Movement. The journey has been long and hard. On an individual level, it has required a test of physical strength and mental flexibility. More importantly, on a collective level, it has required unending commitment to developing and strengthening communication and democracy. If 'Disability Politics' has taught me anything, it is that 90% of my own personal liberation and the work that followed came directly from learning from other disabled activists and thinkers who have gone before. By understanding their ideas, I have been able to develop projects in disability equality training and infrastructures for independent living. This process has driven my entire working life. Today I want to describe a particular personal and collective experience that for me sums up Advocacy for systems change. I have called this journey: 'From Break Out - To Break Through' The 1970's The system we wanted to change was legal and institutional - the advocacy was based on giving disabled people control over the finances that pay for personal care arrangements. Until the 1970's all disabled people in the UK were either 'cared for' in residential institutions or at home by their families or social service home care staff'. That was until a small group of residents in a charity home decided they wanted to break out and live in a community. This small advocacy group, led by a man called Paul Hunt, began by asking for money that was financing their incarceration, to be paid over to them directly, so they could organize their own personal support. As often the case with significant moments in history, when change is sparked off, it began with a direct challenge to the establishment. I think of the black civil rights movement and of Rosa Parks refusing to give up her seat to a white man!! For us in the UK the challenge to residential care and the State being our "Carers" came from Hunt when he wrote a letter in a National Newspaper inviting disables people trapped in homes to join a self advocacy group to fight for change. This was the beginning of the UK Independent Living Movement. A watershed: a handful of courageous individuals trapped in institutions developing a new way to live and sending out messages of hope. Advocacy in its purest form. Our heroes who took great risks in questioning the notion of institutionalized care. They wanted the money redistributed from the institution to the individual disabled people so they could take care of themselves. This was the beginning of the campaign for Direct Payments - that was to change the law 25 years later. A campaign where disabled people began to ask collectively for the financial power to change hands. The 1980's The letter sparked "break-outs" - the most famous being Project 81- in a local region called Hampshire. A self advocacy gang of five disabled residents of Charity/social service home, who vowed they would be out living in the community, controlling their own care by 1981 - they started planning in 1977. Not only did they achieve their aim but they developed and formalized their experience to the extent that it became a sort of blue print for other disabled people wanting independent living. Thus emerged the first Center for Independent Living in Hampshire - HCIL, the body which was not only going to support disabled people in their struggle for Independent Living but which would begin the wider campaign for Direct Payments. HCIL had to demonstrate in very practical ways, how a whole new way of providing disabled people with personal assistance schemes. These new arrangements were and are challenging the historical relationship between providers of care and those who receive it. Success in 1996 Employing and directing your Personal Assistance is indeed at the heart of Independent Living. For the disabled people's movement in the UK, the Direct Payments Act, which was "Born on the 4th of July", symbolically American Independence Day, is the realization of 20 years of collective advocacy. Before the Community Care (Direct Payments) Act 1996, it was illegal for local social service departments to pay money directly to disabled people to purchase their own care. Personal assistance (care) was organized centrally by local/regional social service departments. They provided a home care service or regional care - thus the local authorities via professional staff were in control. Now disabled people can chose to exercise that control by accepting a payment instead of a service, that they have been accessed as needing. It is quite amazing to think it took 25 years for the Berlin Wall of institutionalized care to come down. This fundamental shift in power - i.e. developed purchasing power - tested the willingness of those in the care business to really empower their so called 'client' group. Lobbying for Legislation Like other pieces of civil rights legislation e.g. the ADA, the Direct Payments Act was not easy to achieve. I was central to the lobby and took on the job of representing the mass of arguments and evidence coming from our disabled constituency. This was a difficult task because as a disabled woman I needed to be taken seriously by government officials who are predominately non-disabled men and I also needed to keep the confidence of the disability movement so that I could represent them powerfully. I think I managed to satisfy both groups. What helped me enormously and why I think we achieved such a strong campaign, was because we were highly structured in our representations with Government officials and politicians. When Paul Hunt began the first consumer group he stressed the importance of being 'consumer controlled and led'. We held true to that legacy as we built structures for representation and consultation throughout the Independent Living Movement. Thus, when it came to advocating our plans for Direct Payments Legislation, we had a national Independent Living Committee. All our regional Centers for Independent Living fed into that Committee with their views on what the legislation should address. I took my brief from the committee which gave me national authority when lobbying and working with the legislators. This process was tremendously democratic and supportive. We worked from both within and outside. From within we joined the Government's Technical Advisory Group whose job it was to frame the law. From out side we lobbied with delegations, gave individual evidence and compiled research on the cost and administrative effectiveness of Direct Payments. Our representations were so unified and well presented that any arguments against this Law were demolished, leaving the politicians and Social Care Professionals with little choice but to accept defeat. To save face they termed it ' working in partnership with service users' and we have gone along with that as a political means to an end! In our hearts we know it was a victory for further control over our lives - I say 'further' as we are not there yet! Implementation Stage Once we had achieved the legal change, we moved fast to secure funding from the Government to set up a body to assist with the implementation stage. It was all very well giving disabled people the resources to control our own support, but without the information, advice and training to do it the legislation would set disabled people up to fail. The Independent Living committee immediately submitted a proposal to the Government for a three year grant to establish a national center to provide the new support necessary to both disabled people and social services. As we had developed independent living infrastructures over the last 20 years we felt we were the best people to do the job. For once, the government agreed with us! I'm happy to say the new Center is now established and is women led. All three workers are women. We not only work on the implementation of the legislation but support local and national groups of disabled people in contributing to the further development of national policy on community care. This form of advocacy has challenged the historical process whereby all policy was decided by medical and social care professionals. Now that disabled people have changed the system, there's no going back. This to me is advocacy for systems change at its best. ---------- SUSAN CHITIMBE Organizing for Legislation and Policy Development Susan Chitimbe is the Executive Director of Disabled Women in Development in Malawi In recent years persons with disabilities themselves have been in the forefront in providing an impetus for change and it is them, in their tens of thousands whose work has transformed the climate of public opinion to one of acceptance that disabled persons are entitled to live independent and dignified lives. Although this can be recorded as an achievement, the issue of legislation or policy making has remained an uphill challenge. Mobilizing for Human Rights The first strategy that has been deployed by the disabled persons has been to mobilize themselves into their own organizations to speak on behalf of themselves in National Assemblies and Regional Groupings in order to form unified forces of change. They have also sought representation in their organizations that fight for human rights. In my country, my organization, Diwode (Disabled Women in Development) has formed linkages with other NGO's in order to advocate for disabled persons. My experience has shown that it is imperative that disabled persons themselves be animated and educated on the issue of Human Rights so that they can be able to draw linkages between other human rights and their own disability issues which are also human rights issues. Once disabled persons can fully grasp Human Rights issues, they will, therefore, be well poised to lobby for equal opportunities legislation and also act as their own watchdogs so that, should legislation or policy be violated, they can be able to seek legal recourse. This process is very difficult in Africa where the majority of disabled persons have been denied educational opportunities due to the negative attitude to which they have been subjected to since time immemorial. Therefore, the majority of them have not been able to progress beyond Primary School Education that is, those who have had the privilege of going to school. The situation is bad especially for women with disabilities. In my country, human rights organizations, focusing on disability rights in the context of human rights in general have been formed in order to sensitize both people with disabilities and the general public on human rights and also to initiate legislation on equal opportunities. This will involve disability organizations, government and other NGO's. Disabled Women in Development While Diwode (Disabled Women in Development) will focus on economic development for women with disabilities it will also champion legislation on equal opportunities. It has already linked with the Council for Non Governmental Organizations and is also represented in the National Commission of Women in Malawi. Organizations of people with disabilities have also formed an equalization of opportunities group to press for legislation in countries where it does not exist. I feel that disabled persons should utilize other existing resources to further this issue of legislation because these issues tend to be technical and, therefore, the most effective strategy is to deploy even able bodied technocrats who have been properly sensitized to fight alongside disabled activists. Any policy or legislation without any back up mechanism is not useful. Therefore, as a conclusion, legislation becomes effective if the people concerned, people with disabilities in this case, fully grasp their issues and are to fully comprehend the legislation or policy. ---------- SUSAN DANIELS The Right to Work Susan Daniels, Ph.D., is the Deputy Commissioner for Disability and Income Security Programs, U.S. Social Security Administration. First of all, I am delighted to have a chance to talk to you all this morning about work. My first thought in talking to an audience primarily of women is we have to make something very, very clear. Women all over the world work. Raising a family is work. Taking care of a home is work. Taking care of sick children and aging parents is work. Doing dishes is work. Doing laundry is work. Paying the bills is work. Helping your children learn to read, holding them when they are depressed and upset, taking care of the emotions, the bodies, the health and the daily lives of a family is work. And so I honor all of the people here today that work at home to help make our societ