Judith Heumann nas je napustila

The global movement for independent living and disability rights has lost its most outspoken, powerful and tireless spokesperson. Judith Heumann passed away on March 4 at the age of 75. Judith was known around the world for her clarity of vision, charisma and gift for making the rights of people with disabilities evident to everyone – from local disability groups to heads of state. A fearless speaker, she knew how to be firm - if necessary. But I never saw her insult or belittle anyone. Despite all her victories, she had no enemies. She cared about people and made them feel seen, heard, and remembered. This was one of the reasons for her accomplishments in thirty years of politics in Washington, D.C., as Assistant Secretary of State at the U.S. Department of Education under President Bill Clinton, as the first Special Advisor on Disability at the World Bank, and as “Ambassador for Disability” at the State Department under President Barack Obama. Before moving to Washington and working for the federal government, she co-directed the Center for Independent Living at Berkeley, the Mecca of disability activists and organizers, with Ed Roberts. They would come from Europe, Asia and Africa and spend enough time there to learn how to create something similar in their own country. With Ed Roberts and Joan Leon, she founded and directed the World Institute on Disability in Oakland, California, a think tank for research, advocacy, and policy formulation. In 1985, as a WID fellow, I analyzed Swedish community support services and proposed a completely new type of service, which I called “personal assistance”. Best of all was living at Judith's house in Berkeley for four months, dining together, partying and traveling with her. It was the center of Berkeley's legendary disability community. Then, and during my many subsequent visits to Berkeley, I witnessed her endless stream of visitors from other countries, the many initiatives she launched within and around CIL and WID, such as the Disability Rights Education and Defense Fund, her radio programs with Berkeley's KPFA station, the many people in academia, law, and politics who were proud to be her friends. Over the past few years, she has worked at the Ford Foundation, written her autobiography, and built a rapidly growing community around her podcast, The Heumann Perspective, with a newsletter and interviews highlighting leaders and the advancement of people with disabilities. She was the star of the Oscar-nominated documentary “Crip Camp,” which chronicled the growth of the American disability rights movement that culminated in the implementation of the Rehabilitation Act of 1974 and the Americans with Disabilities Act of 1990. She played an instrumental role in both. Outside the US, Judith has influenced US government and donor foreign policy through her positions in Washington to support independent living initiatives in developing countries, often initiated by people who have trained at US Independent Living Centers. As far as I remember, at every international gathering people with disabilities would gather around Judith. She remembered everyone, their names, their families, their circumstances. Everyone felt she was a special friend. Judith has made great use of her expertise as a community organizer, in disability policy, government agencies and her vast network connecting people to each other for mutual benefit. She has advised many national organizations, both inside and outside the US, in forming coalitions and alliances for people with various disabilities with other civil society actors to influence national disability policy. Her skillful and modest way of making suggestions in meetings often fascinated me. Judith also played a role in the establishment of ENIL, the European Network for Independent Living, from the initial idea to the conference in Strasbourg in 1989, which she attended. Since then, she has presented in person and via video at the ENIL Freedom Drive. Many national organizations in ENIL sent delegations to the US, including meetings with Judith. Judith and Ed Roberts played a key role in introducing access to independent living and disability rights in Sweden. They both came to my conference in Stockholm in 1973 to present and were interviewed on Swedish TV. The direct result was the STIL pilot project, 1987 to 1989, based on my WID monograph, which tested my vision of personal assistance. In 1994, the Minister of Social Affairs, Mr. Bengt Westerberg, turned the vision into a national law. STIL invited Judith many more times to trainings and conferences. Judith has been on similar trips and interventions in numerous other countries. Judith has served on many NGO boards, including the Stockholm Institute for Independent Living (since 2016). We will greatly miss her wisdom, advice and contacts. I met Judith at the first GINI Conference on Independent Living in Chicago in November 1981 and we have been friends ever since. We were much more than collaborators. (All her friends say so!). Over the years we have shared personal things, family stories, love affairs, medical problems and fears. We could joke and argue, like brother and sister. If I didn't call her once a month, she would call me just to talk about everything on our minds. She ended her last text message from the hospital with "your sister Judith". What can we learn from Judith? Not everyone can be as bright and quick as Judith was. But we can all try to cultivate kindness and understanding for other people—with or without disabilities, allies or adversaries. Even the person who discriminates against us could learn a new perspective – given the chance. Confrontation may not always be the best strategy. Judith's second lesson is that friendship makes a difference. Working with friends is a pleasure in itself. We will be more effective when we like what we do. Friendship is also a powerful antidote to feeling victimized, which can easily cause burnout. Let's keep her memory alive by trying to follow Judith's lessons.

Judith Heumann is survived by her loving husband Jorge Piñeda and her brothers, Joseph and Ricky Heumann.”

– Adolf Ratzka, Stockholm

Citizens' Association Information Center for
persons with disabilities "LOTOS" Tuzla

Udruženje građana Informativni centar za osobe sa invaliditetom "LOTOS" Tuzla

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