Foreword to The Independent Living Movement: International Experiences

Heumann, Judith E.  2003.  Foreword to The Independent Living Movement: International Experiences.
Judith E. Heumann, MPH (Masters in Public Health), Advisor on Disability and Development, The World Bank tells about her own life and how as she was continually aware of the invisibility of disabled people in society. In her work with the World Bank, she has travelled widely and points out, "Poverty and social discrimination have gone hand in hand." In the forthcoming English version of: Alonso, J. Vidal Garcia. 2003. "El Movimiento de Vida Independiente, Experiencias Internacionales." ("The Independent Living Movement: International Experiences." In Spanish, PDF, 1.46 MB).

I would like to thank the creators of this book for their efforts. The opportunity to read the views of people across the world who are involved in the Independent Living Movement is one of the best methods that will help this Movement continue evolving and growing across the world.

In 1949 when I had polio there was nothing resembling the Independent Living Movement. As was the case for disabled people across the US and throughout the world we were not seen as a individuals who could make contributions to our society. We were out of sight and out of mind. Few laws existed which made it illegal to discriminate against disabled people.

At the end of the WWII the US economy was expanding and new communities were being built. New opportunities were being created for all to benefit from. My parents were immigrants. My father had served in the military, come home, met my mother and married in 1946. They had bought a home in Brooklyn, New York and started their family. They were a part of the society that believed hard work would enable them and their family to benefit from the American dream.

They began to realize that society was not prepared to allow them to raise their daughter as they anticipated. Basic requirements for non-disabled children were not the same for a disabled child. For example, all children had to go to school five days a week for six hours. My mother took me to school to register me so that I could begin formal learning. To their surprise the principal told my mother that because I was in a wheelchair I couldn’t come to his school. He told my mother to contact the education authorities and they would send a teacher to our home. My parents were frustrated and angry and didn’t know where to turn. They didn’t know any other parents with disabled children so they didn’t have a support network. When my mother contacted the education authorities they said that they would send a teacher to my house, but for only 2 ½ hours a week.

My parents realized early on that they were going to have to become advocates in unchartered waters. They, like all parents around the world who believed in their children, were beginning to pave a path towards equality. My parents were a very influential force in my life. They were my first role models. They showed me on a regular basis that accepting no for an answer was unacceptable. Later, I learned from other disabled friends that their parents had also been role models for them.

As I grew up I was continually aware of the invisibility of disabled people in society. It was rare to see people with any type of disability on the streets, in the stores, in jobs, on television or in children’s books. There were no curb cuts, or ramps on the corners of every street, there were no accessible bathrooms and no accessible subway system and no accessible buses and there were basically no laws at the state or national level that made any of these forms of discrimination illegal.

Slowly I began to meet other disabled students at the segregated school that I finally started attending when I was nine years old, and at the segregated summer camp I attended. We were all discussing our dreams to remove barriers and to make it illegal to construct these barriers in the first place. We were beginning to gain strength from each other.

While we were normally invisible we were frighteningly visible a few times a year when the telethons (TELETON (espectáculo televisivo para recaudar fondos): NOTA DE VIDAL) were on television. Telethons are methods used to raise money to do research for a cure for various disabilities and they also raise money to provide disabled persons with items they need but can’t afford. As a joke we said that no disabled person should not go out and try to find a job the day after a telethon because who would want to hire the hopeless and helpless “cripple” exhibited on these television programs. The image that society had of us was that we were waiting for our disabilities to be cured and had little interest in entering into the mainstream.

We were realizing that while there were many organizations that worked for disabled people, most of these groups were not run by disabled people, did not aggressively advance our agenda of equality and also didn’t hire us. They followed a medical model. Their goal was care and cure and they couldn’t understand that we could be happy as disabled individuals. We wanted dignity, equality and respect, not charity.

In the 60’s we began to see the creation of organizations run by disabled people. Many of these groups represented people with different types of disabilities and they were fighting for accessible streets, buses and trains, for education and employment opportunities, the ability to live in the community with assistance as needed.

In the US in the late 1960’s and early 1970’s we began to create organizations that evolved and began to have political influence at the local, state and national levels. These groups quickly become organizations that focused on empowering disabled people to speak out and to do so in an organized way. We worked on the passage of numerous pieces of legislation that began to help change the fabric of our communities. We were becoming much less invisible.

My life was strengthened as I worked with other disabled people to improve our communities and our lives. In 1970, I was denied my teaching license because I used a wheelchair and could not walk. My friends and I set up an organization named Disabled In Action. This group supported my lawsuit against the Board of Education. I won the lawsuit and became a teacher. Through these efforts we gained self-respect and worked create a vision for a new and very different future. We were realizing that together we were making a difference. The more we achieved the more we wanted to change. Living lives as second-class citizens was not something that we ever wanted and now we were beginning to see that we could put an end to this discrimination even if it was not going to happen over night.

In 1973 I moved from Brooklyn, New York to Berkeley, California to work with the first independent living center named the Center for Independent Living. This group was different from others because it envisioned an NGO that was also a business. People would not only control the board of directors but would also be its employees. We were being paid to do work that was helping to free disabled people to live a life where disability is natural and where people were beginning to see that there involvement in the Movement not only helped them but helped to remove discrimination for many others.

The US Independent Living Movement is now in it’s third generation and is continuing to evolve. Over thirty years we have seen the creation of over 400 independent living centers. These organizations are change agents. Based on nationwide efforts among disability groups federal legislation was adopted in the 1970’s that supports the development and maintenance of centers for independent living. Many are receiving financial support from the national, state and local governments, foundations and corporations, local communities and in some cases they are operating businesses. These organizations are in urban and rural communities, they employ and work for people with all types of disabilities and people of all ages. These advocacy efforts are resulting in significant social change.

CIL, Berkeley was incredibly dynamic. Not only did disabled people run the organization but also many had significant disabilities. We used motorized wheelchairs, respirators, had speech disabilities, were blind, deaf and had emotional disabilities. Other disabled people from all across the US and many other countries began to hear about our work and wanted to learn what we had done.

I have been very fortunate to work with many disabled people around the world who were working in their own communities creating similar models to those of the US. We didn’t know each other but gradually our common visions were greatly strengthened by the realization that we were all addressing the same level of discrimination and isolation. The solutions have varied but in all cases disabled people began to see themselves as change agents. We realized that we could have the same levels of success as other social change movements: such as movements concerning women, civil rights, the environment and indigenous peoples. We realized that we had all been denied rights and opportunities and we began our fight to gain equality.

We have a responsibility to each other. We must continue to compare and learn from each others’ experiences. We must share our knowledge. As peers, we must reach out and enable people to begin to dream about their hopes for the future and to gain their voices. They in turn must work with others to achieve this goal.

I recently visited several Asian countries where I met with disabled people in some of the poorest areas of the world. I was so excited by the work they were doing. For example, in India I visited self-help groups that were meeting on a regular basis and were identifying problems and creating solutions. There were adults, teenagers, and parents with disabled children. They were working to gain access to benefits that they were eligible for, they were working to get children in school, they were working on developing businesses to support themselves and they were fighting for dignity and respect in their communities.

I could see that disabled people were gaining their self-respect and were slowly getting the community to begin to think about them in a different way. Some projects are giving disabled people the opportunity to train other disabled people to be development workers. These development workers are going into communities to train other disabled people.

During the twentieth Century we saw the emergence of a powerful movement of disabled people confronting and removing barriers that were previously considered insurmountable. Our challenge for this century is to continue our struggle more vigilantly ensuring that the poorest of the poor throughout the world are given the same opportunities to define their futures and become productive members of their communities. In every country disabled people occupy the lowest rung of the social and economic ladder. Poverty and social discrimination have gone hand in hand.

This book will enable us to learn about our successes in the Independent Living Movement around the world. We need to use it to expand our knowledge and to engage the next generation of young and newly disabled people so they will take up leadership in this fight for social justice and economic equality.

I commit myself to continue with you all in this struggle.

Judith E. Heumann, MPH (Masters in Public Health)
Advisor on Disability and Development, 
The World Bank 
February 24, 2003


Parts available in English from the forthcoming English version of: Alonso, J. Vidal Garcia. 2003. "El Movimiento de Vida Independiente, Experiencias Internacionales."("The Independent Living Movement: International Experiences.") Internet publication URL: www.independentliving.org/docs6/alonso2003.pdf (In Spanish, PDFPDF, 1.46 MB).