Alvaro Gutierrez interviews Susan Dooha, Executive Director of the Centerof Independence of Disabled

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Hello, and welcome to Access Project for All. Today our guest is Susan Dooha; she is the executive director of the Center for Independence of the Disabled. The topic today is going to be the ADA at 25, and we’re going to discuss with her all related to this important center.

Alvaro Gutierrez: Hello, and welcome to Access Project for All. Today our guest is Susan Dooha; she is the executive director of the Center for Independence of the Disabled. The topic today is going to be the ADA at 25, and we’re going to discuss with her all related to this important center. So thank you so much, Susan, for being with us.

Susan Dooha: It is my pleasure.

Alvaro Gutierrez: Thank you, Susan, and my first question is what can you tell us about the Center for Independence of the Disabled people?

Susan Dooha: The Center for Independence of the Disabled in New York has been in the forefront of cross disability civil rights actions in New York State for more than three decades. We’ve been responsible for helping people with disabilities find support and develop individualized road maps to success in their achieving their own goals. And we have been vigorous in removing barriers to full participation in all that New York City has to offer. We are a skilled and experienced educator of the general public about disability and are in the forefront of efforts to remove stigmas that we face every day in our daily lives.

Alvaro Gutierrez: Very interesting, and by checking your website, I read something about the landmark civil rights decision. Can you tell us about that?

Susan Dooha: Recently, the Center for Independence of the Disabled in New York filed a civil rights legal law action in federal court to force the City of New York to serve people with disabilities in the event of a disaster, and to include us in planning to protect the population in the event of disasters. And we took this action after more than a decade of attempts to work with the City to remedy gaps in disability service during a disaster that were identified on and after September 11th of 2001.

After many years of work with the City, we determined that they were not prepared to provide shelter in the event of a disaster, to provide transportation to help people evacuate, and to search for those left behind, and ensure their essential needs were met in the event of a disaster. And so, we were responsible for researching, organizing plaintiffs, developing testimony, and bringing forward the court case in federal court that resulted in a finding by the federal court judge that New York City had violated the federal civil rights of people with disabilities just as we said that it had. And that New York City had to remedy all of the many violations cited in the decision as a result of our research and our testimony. And we were able to then begin to work on a plan for remedying all of these wrongs. This decision and our work since the decision to remedy these civil rights violations stand as the most far-reaching example of civil rights action in disaster preparedness and response across the nation. And we have set a new standard for a comprehensive understanding of what does it mean to plan for people with disabilities in the event of a disaster. And we are very, very proud that the work we have done is going to make a life-and-death difference, and that we have brought New York City to this point.

Alvaro Gutierrez: Susan, that is very important and I would like to know what is going to be the process then, once this is finalized so to speak, and is it fully like a law or whatever the name of the result. What is going to be the practical matters for the population for the people with disabilities in New York when a disaster comes? Can you tell us what is the idea, and how can they go to a certain place, or how’s going to be the system for them?

Susan Dooha: Well, to begin with, it is the law; it is the law, we won. The people with disabilities of New York won, and the decision stands and stands as an example for all cities, towns, counties, states all across the nation. Nothing further has to happen for this very detailed comprehensive decision to be used as an example in planning in every locality. Nothing more needs to happen for that to occur. The victory is ours.

In New York City, what that will mean for people on a daily basis, is that in the event of a disaster, they will be able to get transportation to leave where they are and go to a shelter. When they get to the shelter, they will be able to use the ramp, get in the door, use the bathroom, lay down on cots, get to the food area; they will be able to get information in alternate formats that they can understand, in large print or audio. They will be able to have a quiet room if the crowding in the shelter is particularly stressful. They will be able to get appropriate diets, they will be able to charge their equipment, they will be able to receive other kinds of health and accommodations according to their needs as people with disabilities. And these must be negotiated on an individual basis. This is absolutely critical for people with disabilities to have full and equal access. In addition, people with disabilities will be able to evacuate from high rises. New York City is a vertical city. It is people living on the 17th floor, on the 23rd floor, and the city is responsible for making a plan to ensure that people with disabilities can be evacuated in a disaster rather than left behind. It is imperative that, after a disaster, canvassing occurs and now, after a disaster in New York, people will go out with tools and information to collect information and resources to give, to bring food and water, essential medical supplies and assistance and help with evacuation to people with disabilities who for whatever reason were unable to evacuate from their homes in the event of a disaster or who were told to shelter in place when a disaster struck. And for all of these things, and for other things as well, including communications in the event of a disaster, being fully accessible for there to be full accessibility for people who are blind, and full accessibility for people who are deaf. People with disabilities will be integral in the planning process from the very beginning. We will be at the table as experts on our own experiences, and we will draw on the experiences of our community from going through previous disasters to inform our work going forward now, in planning to remove all of the barriers cited in our federal civil rights victory. NR 5/13

Alvaro Gutierrez: Wow, that is a lot of important information there, Susan! I am happy I was able to analyze that part of the website because this is one of the important things I have heard about progress for equality for people with disabilities. You have to be very proud of your organization for this very important achievement.

Susan Dooha: I’m very proud of the people who have made this possible. I am very proud of the people that CIDNY serves and represents, and I am very proud of our board and our staff for doing the very hard work to document the history of disaster response in New York City and its impact on our everyday lives. So I’m very proud of all of the people who have made this possible.

Alvaro Gutierrez: Now do you know of any of the inspiring historic people who have contributed to help create the ADA?

Susan Dooha: Yes, I’ve been very privileged to work with a number of people who were part of making history in the United States in the passage of our civil rights law. I very much enjoyed working with Bobby Silverstein, an attorney who worked behind the scenes to write and to help with the passages for the Americans with Disabilities Act. He was not only there at the birth of the Americans with Disabilities Act, but he also represented our perspective on employment and health issues following the passage of our Civil Rights Act as we tried to realize the full implications and meaning of our Civil Rights Act in all of the sectors of our lives. I also had the privilege of working with Frieda Zames for many, many years, who was a very strong advocate for our center as a member of our board of directors for more than a decade. And she led some of the actions taken prior to passage of the Americans with Disabilities Act, and she wrote a history of the movement, and helped to catalogue the history of independent living centers like ours and so her leadership was phenomenal to learn from and to witness.

And no civil rights law is complete until it is fully implemented, and very often for it to be implemented there must be further litigation. There must be lawsuits brought under the law to give meaning to the law in terms of people’s daily lives. And I’m very privileged that on my board of directors is Jaclyn Okin Barney, who brought one of the first lawsuits under the Americans with Disabilities Act to ensure that she could take the tests that she needed to go onto higher education, and she then went on to becoming a disabilities rights attorney. These are just a few of the people that I have met, and had the privilege to learn from, who worked on the passage of the Americans with Disabilities Act, and who worked on making the vision embodied in that Act real in our daily lives.

Alvaro Gutierrez: Now, tell us why you think it is important to celebrate the ADA at 25 this year 2015?

Susan Dooha: Well, as a woman with disabilities, the Americans with Disabilities Act, our civil rights law means that I have a right to a level playing field. I have a right to a remedy if someone discriminates against me. I have a right to have barriers removed that prevent me from having full and equal access to the opportunities that are available to others, and the same is true for all people with disabilities. We are now seeing the first generation of young adults entering the work force, going to vote, seeking healthcare, going out to dinner, riding a bus, who have never known a United States of America that didn’t protect their civil rights, all because of the Americans with Disabilities Act and the pioneers who made it possible.

Alvaro Gutierrez: I would now like to go into about New York in particular. Now, if you can tell us how you have seen a change in the way people with disabilities are treated since the passing and execution of the ADA? How has that change been noticed in New York?

Susan Dooha: As a result of our work here in New York City implementing the Americans with Disabilities Act, I now see people every day who can attend a play in a Broadway theatre, ride a bus, get shampoo at a drug store, shop at the grocery, cross the street, ride a subway, take a taxi, go to the movies, testify at a government hearing, be a lawyer in court, serve on the City Council, go to work, and seek shelter in an emergency. These are all changes that have occurred, since the passage of our civil rights law, the Americans with Disabilities Act, 25 years ago.

Alvaro Gutierrez: Many things are improving, many things are changing for the better, but still there is always room for improvement. What do you think needs to be improved in this legislation?

Susan Dooha: I would say that there is a lot of work to do, and one reason to celebrate is that it is time to roll up our sleeves again, and make the next 25 years of change happen. And what is left is implementation of the existing law. It is always a struggle to bring about real change in measurable ways once a law has passed, and it has to be implemented and forced in so many ways. It will be up to people with disabilities to make the law a daily reality by telling our stories, by working with policymakers and government agencies to ensure that they adjure to the law, and to ask for the courts to step in when necessary. Some areas where the law has not been fully applied, and where we face very painful discrimination are in the areas of employment and healthcare. It is still very difficult to go to a doctor’s office in New York City and be able to read the information that the doctor provides, because it is not been made available in an alternate format. It is very difficult to go to a doctor’s office and not be able to get a certified sign language interpreter to help you understand and communicate effectively. It is very difficult to go to a doctor’s office and not be able to get on the examining table because it doesn’t raise or lower. It is very difficult to be discriminated against because people see you in a stigmatized way and don’t believe that your quality of life is such that you deserve and have a right to receive the full array of health services that are available to people without disabilities.

It is imperative that we address also the discrimination that occurs in employment. People with disabilities are still too far, far too concentrated in poverty in New York City, even more than New York State and the United States people with disabilities are living in deep poverty on a long-term basis. When people with disabilities are able to become employed it is often on bottom-rung positions, and they are not able to advance in employment. Even with graduate degrees, people with disabilities are less likely to be employed, and less likely to earn the same dollars in their jobs than people without disabilities. We are also more likely to face claims of discrimination related to our disabilities, of failure to accommodate us, to ensure that we can do our jobs effectively, and we face discrimination in termination from employment as well. And it is absolutely critical that people with disabilities learn their rights in employment and learn how to use those rights effectively. It’s also critical that government agencies that are responsible for ensuring that our civil rights are protected focus on this sector to try to eradicate the terrible legacy of discrimination and stigma that still exists.

Alvaro Gutierrez: You know, Susan, hearing your passion about this subject is very good, very refreshing, you know because this helps people understand the importance of the subject.

Susan Dooha: I’m extremely passionate about the civil rights of people with disabilities. And I have dedicated myself to work in the — and follow in the — footsteps of those who have come before me over this last generation to bring the agenda forward.

Alvaro Gutierrez: Can you tell us if the ADA applies in the same way in all the 50 states of the United States?

Susan Dooha: The United States of America has a body of laws passed by the federal government by Congress, and signed into law by the President. And these laws apply in all of the 50 states. And we have the same set of federal civil rights in all 50 states. Unfortunately, we still must struggle in each state to realize the benefits of our federal civil rights law. And often we must bring legal action in state after state to ensure that our federal civil rights are implemented in our state.

Alvaro Gutierrez: Can you tell us where can we find the whole ADA legislation to learn and read all about it?

Susan Dooha: The website has wonderful information about the rights of people with disabilities and the experiences of people with disabilities, and it takes you to the United States Department of Justice, which has been a partner to people in the disability community in bringing about change. The Department of Justice supported us, for example, in our lawsuit and took our position in the lawsuit to show that New York City had violated our federal civil rights and they agreed with us about the remedies needed. And I am very excited every time I turn to the U.S. Department of Justice to see the actions they are bringing all across the country together hand in hand with the disability community to bring about change.

Alvaro Gutierrez: If any American with disabilities, a woman or man, has any discrimination or has any other ADA-related problem, where can they go for help?

Susan Dooha: I strongly recommend coming to independent living centers like CIDNY, the Center for Independence of the Disabled in New York. We exist in communities all across the country and we’re a good first stop when someone is facing discrimination because we can help advise you, and we can help you find a community of support and join the movement for change. To me personally as a woman with disabilities, as the wife of a man with disabilities, as the mother of a teenager with disabilities, it means an opportunity to excel, it means a level playing field, it means that if someone discriminates against me, that I have a remedy, and I can stop that discrimination. It means that I have a right to fully and equally enjoy all benefits of society. I can vote, I can travel, I can get healthcare, I can have a job, I can live in a neighborhood with my neighbors, I can go to the store, I can go to the theatre, I can be a leader in the community, I can help educate others. That’s what it means to me personally. And it means that I have hope for my daughter, and all of the youngsters of her generation. That all what we have done will mean that they can excel, that they can move forward and deal with new struggles.

Alvaro Gutierrez: For those who may have in their families people with disabilities and they feel helpless, because they don’t know about your centers, they don’t know about the services that are provided in New York and everywhere else in the country, what would be your first advice for them to realize that they have so much that they can reach out and get help for their families?

Susan Dooha: I hope that someday soon, people with disabilities who are still young will be learning about the history of disability and the contribution of the independent living center movement in school. I hope that the lessons of our civil rights will be shown in every environment. I hope that every government agency will know that when people with disabilities are struggling, that they can be referred to independent living centers for help. I hope that lawyers all across the country will be ready to help people with disability who struggle with civil rights. I think that we are on radio, we are on television, we are in the newspapers and we are in social media, sharing information about the barriers we face and how we surmount them, how we’re a movement and how we must rely on each other and do this together. And how we can find allies outside of the disability community, people who are like-minded and who agree with us that freedom for all, and equality for all is the goal.

Alvaro Gutierrez: Susan, any final thoughts before we go?

Susan Dooha: I very much hope that our listeners understand that we have a right to a place at the table to speak on our own behalf to create constructive solutions that remove barriers that we face in our lives every day. I hope very much that the people listening will understand that we have a strong history and a legacy of brilliant, capable, effective leaders that we can carry forward into the future, and that we can make the change that we hope to see in our lives.

Alvaro Gutierrez: How can people contact you and your organization?

Susan Dooha: We are on the Internet at We are also available on Facebook and on Twitter. We can be reached by email at

Alvaro Gutierrez: Susan, thank you so much for your time, your knowledge, and your passion because that makes a whole difference always.

Susan Dooha: Thank you, Alvaro, for documenting our history. I’m a big believer in history and that we learn so much from our history as we try to move forward, so thank you.

Alvaro Gutierrez: My pleasure and for our listeners remember you can like us on Facebook, Project Access for All, and you can follow us on Twitter at Project Access for All; you can visit on our website at So from Alvaro and the people from ABS and Project Access for All, have a wonderful day.