The Pioneers podcast convenes the world social change makers to share their knowledge, challenge our assumptions, and offer practical solutions for a more equitable future. The Pioneers podcast is hosted by HeartShare Human Services, a non-profit supporting and empowering marginalized New Yorkers since 1914.

Today we’ll be talking about transportation accessibility with Susan Dooha. Susan Dooha is the Executive Director of the Center for Independence of the Disabled in New York. Their goal is to ensure full integration, independence, and equal opportunity for all people with disabilities. Susan is the Chair of the New York Association on Independent Living. She’s an attorney and has received multiple awards for her legal and advocacy work.

HeartShare NY: Welcome, Susan.

Susan: Hi. Delighted to be with you.

HeartShare NY: Thank you so much. I wanted to start off with you describing what your organization does, and the scope of your work?

Susan: The Center for Independence of the Disabled in New York began in 1978. It was brought about by people with disabilities coming together as part of the Independent Living Movement sweeping the nation. We were the first Independent Living Center created in New York State, and after us, many more were created. Now there are organizations like ours throughout New York State. We serve people in New York City, and people come to us from every area of the city. We have offices in Manhattan, and in Queens but we see people everywhere in this city. In 2017, we reached about 40,000 people. Working with them one-on-one to achieve their individual goals for themselves. Be it to get housing because they’re homeless, be it to straighten out their problems with health care so that they could get the services that they need, or to get resources for food because they can’t stretch their dollars any further, or subsidies for rent because with their income which is generally SSI or SSDI, they don’t necessarily have enough money to make ends meet and to pay the rent in New York City. So we work on these issues that people bring to us. Most commonly about housing, and then about health, and benefits, and about advocacy. People needing help learning advocacy skills and wanting to do advocacy for themselves, and then sometimes in needing some support for their advocacy. So we do a huge amount of one-on-one work on the phone, in person through home visits, whatever is required. We have also a focus on education. We believe in educating the community at large to better understand people with disabilities and the lives that we lead. We provide a disability literacy training for nonprofits, for government agencies, and for businesses to help them understand how to engage with people with disabilities who might be their bosses, or co-workers, or customers in a competent way. In a respectful way.

HeartShare NY: That’s incredible. I need to look more into that. I feel like that’s something that a lot of people need because we talk a lot about intersectionality and bringing everyone to the conversation, like in these political times, but disability is often left out of the conversation.

Susan: I couldn’t agree with you more, but there’s one encouraging sign which is that some large corporations and at least one foundation that I’m aware of, have decided to include disability in their diversity policies, and are newly focused on recruiting and retaining people with disabilities. During President Obama’s Administration, he signed an Executive Order to require federal agencies to meet goals related to the hiring of people with disabilities, and they not only met but exceeded their goals. So we do community education about that. We also help people understand how to do things. How to fill out applications for housing, how to deal with student debt, how to do your taxes, how to shop for nutritious food. You name it, and definitely know your rights workshops about everything from health care, to housing, to food, to transportation. We also do a tremendous amount of advocacy. We organize a network of people with disabilities to learn to become advocates, to sharpen their advocacy skills, to understand how change comes about, and to be participants in it. To tell their own stories, and to use their own experiences to help make a change. We spend a lot of time surfacing issues that are affecting people with disabilities. Investigating them further by doing on the ground, hands-on surveys of conditions for people with disabilities. We bring all of that information- the stories, the surveys, and information about the laws that protect us- to lawmakers to try to get them to implement existing civil rights laws at a federal, state, and city level.

HeartShare NY: You were mentioning that your team was going up to Albany this month. What are you going up for this June?

Susan: We are up in Albany around some transportation legislation that’s been proposed that would strip away the protections that we and other organizations won through a lawsuit to ensure that there would be accessible taxis in New York City. We are hoping to defeat that legislation. We are also still working on bills to increase access to health care. We are going up to educate lawmakers on really, a wide array of issues. So that’s just a tiny taste of what we’re doing, but there is of course so much more. We also go to Albany to work with the Governor’s Executive Agencies, meaning state agencies, around their obligations to people with disabilities and where things may be falling short. Where there are unmet needs, or where there are gaps in the system. Things like that. Through all of these activities, we help change state laws. We’re very proud of the work that our Advocacy Network has done, and our community organizers have done. We are very involved also in litigation. When push comes to shove, and all other efforts have failed- efforts to expose the issue through the media, efforts to speak directly with people responsible, efforts to document the issue and show how it occurs, efforts to provide solutions to the people who make the policies- when all of those things fail and nothing else is available, then we move forward with the litigation. Very often with other organizations, and with individuals who’ve brought us their experiences and shown us why the law needs to be enforced or interpreted. That’s a very exciting part of what we’re doing.

HeartShare NY: Yeah, I mean it sounds like you are boots on the ground as soon as something happens. You’re out there, which is incredible, and in a wide array of issues affecting the disability community. I was hoping if, that you could elaborate on the challenges that you face in advocating for accessible transportation. As far as I know, only 25% of the MTA subway stations are accessible, and I believe that 110 out of 472 subway stations have elevators. Can you talk about the challenges that you face in changing that?

Susan: Yes. It’s also true that because elevators are in disrepair and are not maintained adequately, something that’s required by the Americans with Disabilities Act and other laws, the accessibility rate of elevators is actually around 18 percent. New York City is behind other major cities in the United States in creating accessibility in its subway system. Boston, Philadelphia, Chicago, San Francisco, and Washington DC have much higher rates of accessibility of their metro systems, their subway systems for people with disabilities. Some of these cities even have a 100% accessibility rate for their subways, and we’ve been working on this issue for a very long time. Really since we began as an organization. We heard from people who were coming to us to bring about change, as far back as 1979, that the subway system and other forms of public transit were not working for them, and so we were engaged in surveying trends in services and how they met or did not meet the need of people with disabilities. Then in 1980, we helped to lead a coalition of people asking the MTA that trains and buses be made accessible for people who have mobility disabilities who use wheelchairs, or walkers, or canes, or simply have difficulty walking and getting around. Then in 1999, we helped with the negotiations of a settlement agreement of a federal lawsuit guaranteeing improvements to the paratransit program Access-A-Ride, which provided transportation for more than 40,000 people then in New York City. Then in 2004, we participated in a survey of subway platform safety for people with vision disabilities, and we used that data in a media campaign to draw attention to the lack of appropriate platform edge markings. In 2005, we became a partner in a coalition that advocated for accessible taxicabs being part of the fleet of yellow cabs, and later we contributed to a successful federal civil rights case brought to require additional taxi cabs in New York City- that one provision that 50% of the cabs must be accessible.

HeartShare NY: Is that actually true today because I know that Access-A-Ride is still troublesome? I don’t know if the NYC taxi cabs actually provide.

Susan: We are having some setbacks with respect to taxicabs, in part because of the rideshare industry- Uber, Lyft, and others- that are making the value of medallions for accessible taxis decrease. So it is becoming too expensive for taxicab owners to purchase them and put them out. So we have been set back in attempting to meet the goals regarding accessible taxicabs coming on the street. That case is still rolling out and facing challenges that could in fact, really defeat the provisions that we created in law. So that’s an important set of issues to watch. Right now there is a bill in Albany, sponsored by Senator Golden from New York City, that would really further gut the possibility of having an accessible fleet of cabs, but we work on other issues as well that relate to transportation. In 2014, we surveyed the sidewalks of New York, and we looked at whether there are curb cuts right at every corner that are compliant with the standards established by the Americans with Disabilities Act.

HeartShare NY: What did you find?

Susan: We found that 77% were not in compliance.

HeartShare NY: Really? Wow.

Susan: Yep. Either because they didn’t exist, there was no curb cut to use in crossing the street, or because they were at a very steep angle they didn’t have markings on the service so that someone who is blind and using a cane could tell when they’re entering the street from the sidewalk, or they had big potholes in them and were full of debris quite often so that people could tip over into the street in their chairs. So working on the subway accessibility is just part of our commitment since our very beginning, to make it possible for people with disabilities to travel independently and safely. We also work on a campaign now regarding paratransit with other organizations, and we are in talks with the MTA about improving the MTA practices for paratransit. First of all, making sure that people who are eligible have a streamlined path to proving their eligibility. Right now it’s kind of a ridiculous process. When people have to recertify for Access-A-Ride, people find that even though they have a permanent disability that is not going to change, it’s not going to improve, that they have to demonstrate their disability all over again which is pretty ridiculous and a waste of resources. We are also concerned about what happens when you make a complaint to the MTA regarding paratransit. Most people report to us that they never hear back. That they never hear whether their complaint was found to be valid, they never are asked for evidence of their complaints, they never are given a response about what the finding was, or what will be done as a result of their complaint, and that’s just plain wrong. Why complain if you think nothing will be done? Then if you don’t complain, how will the service improve? The big issue is the lack of on-demand paratransit for people. You have to reserve Access-A-Ride in advance, and you get punished if you are a no-show. You get punished if the driver doesn’t see you at a stop. You get punished for all kinds of things related to using Access-A-Ride, but what you can’t get is what you could get if you could in effect hail, or use an app to call a vehicle. So people end up taking a tour of the Borough’s rather than being able to get to their location, or they end up not being able to get where they need to go. What does that mean for people? In real terms that means that if your husband is taken to the emergency room, you can’t get on-demand paratransit to take you there to make sure that he’s okay and you’re there with him, or it means that your kid gets sick at school and you can’t just get there quickly to bring them home, or it means that if your boss says, “I need you to cover my meeting today downtown at four o’clock,” you can’t just pick up and count on being able to get there because you can’t get on-demand Access-A-Ride.

HeartShare NY: That must be so frustrating.

Susan: It is. It’s not only frustrating, and wrong, and unfair, and a violation of people’s rights in our view, it also is one of the top reasons that people with disabilities are not employed.

HeartShare NY: Yeah, please talk more about that- the impact of the lack of accessibility on work, housing, all other opportunities.

Susan: Absolutely. It’s one of the top reasons that people with disabilities are not employed. Along with employment discrimination, and along with discrimination in education leading to fewer people with disabilities having college degrees or other credentials. Those are the top reasons that people with disabilities are not employed. Transportation plays a huge role. Imagine you’re trying to get to a job interview and the paratransit vehicle arrives late, or you try to take the subway but the elevator at your stop where you’re going to get out to go to the job interview is shut down without you having had notice, and you now have to take a tour of the subways, and you were late for that job interview. Imagine having to travel for hours to get to work every day on time. Imagine having to travel for hours to get out in the community to meet with clients and co-workers, and to go on-site in places your employer sends you. Imagine trying to get home from work and ending up at home at 10 o’clock at night because it takes you so long, because of all of these transportation failures to get where you need to go.

HeartShare NY: It’s really terrible, and I want to just share with you. So we invited some of our individuals to our Gala because we did some video stories on them, and they were our stars for the evening. The event ended at maybe 10, 10:30. When we talked to them afterwards, I think that because of Access-A-Ride, they probably got home around 1:00, 1:30 in the morning. Just to go to an event, a celebratory event, let alone go to obligatory meetings or to show up to work, they can’t even enjoy it because it’s just so delayed.

Susan: Right. 7 out of 10 of the people who work at CIDNY, myself included, are people with disabilities and so we experience all of the time the problems with transportation and the frustrations. Also, people with disabilities are the maturity of our Board of Directors. So we’re constantly receiving stories about, for example, the board member who tried to get to our meeting got to our office at Union Square within the station, but the elevator was broken, and so he had to crawl up the subway steps. He had to get people, thank goodness he had a manual chair that was relatively lightweight, and it could be carried by people up the stairs, and thank goodness they didn’t break it or drop it, and he was able to get out, but that kind of thing happens all the time. It happens all the time that people with disabilities try to get, for example, to meet us for our bus to Albany early in the morning but because the subway station is broken down and they’re scrambling around in the subway to find alternate routes to get us, they don’t make the trip. One of our staff was going to a community meeting, she’s our community organizer, and she was going to a community meeting, and Access-A-Ride was so late that she ended up there at the end of the meeting. Only just in time for her ride that was meeting her to go back home.

HeartShare NY: My goodness. Susan this is so terrible. How are we gonna fix this? This is just, this is awful.

Susan: It is awful. It’s unbelievably awful. So we’re hoping that through negotiation and through getting money from the legislature, we are going to be able to make a difference regarding paratransit, regarding subways, regarding changes that need to be made to buses, all kinds of things because it’s imperative. It is an economic necessity in the lives of people with disabilities. Right now in New York City, only 30% of us have work, and that is just a horrendous, horrendous number. We absolutely must be able to engage in the community- to go out to vote, to go to a movie, to go to community meetings, to hang out at the park, to go to our kids’ schools. All of these things are part of our lives that we have a right to get to. So we’re hoping through our negotiations, for example around subways, that we will be able to reach a settlement agreement with the MTA, and then win funding from the state of New York to fix subway stations for people with all disabilities. That doesn’t just mean elevators. It means the gap between the train and the station platform. It means how confusing it is to get around the subways if you have any kind of cognitive disability like I do. I’m always getting lost underground when I try and use the subways. So having better wayfinding, having hearing loops in the booths and the trains, having markings on the edges of all of the platforms, so people who are blind don’t end up falling in the tracks. These and other things, all must be done in our view, to bring the subways into compliance with State Human Rights Laws. We are determined through our demonstrations, through our media work, through our organizing, through talks and by going to court to bring about this change. It won’t happen overnight, but we intend to have a timetable for change that will make us fully accessible.

HeartShare NY: I wanted to ask what can our listeners do to help?

Susan: Well, right now we have a community organizer named Shane Anderson who is collecting people’s stories about their experiences with Access-A-Ride or paratransit. We also have a community organizer, Monica Bartley, who is helping to engage people in storytelling work with the media, and demonstrations, and appearances in court to pack the courtroom around subway access. We are also encouraging everyone to come to the MTA Board of Directors meetings and to speak at those meetings about their experiences with transportation in the city. You can reach our community organizers by calling (212) 674-2300, and that is just a great way to connect, and join our advocacy network, and be up to date on everything happening, and up-to-the-minute on responding to alerts in our campaigns to make a difference. To get out and demonstrate at elevators. To get the media’s attention by telling our stories. All of these things make a tremendous difference.

HeartShare NY: That’s wonderful. I’m going to share that with our DD programs. I’m sure that there are plenty of people who have stories that they would love to share.

Susan: That would be fantastic.

HeartShare NY: Yeah, absolutely. Also, I’m gonna send you a little bit more information about something that HeartShare is putting on for the first time this fall. November 1st and 2nd we’re hosting an Ability and Inclusion Summit which is trying to create a pipeline for people with disabilities to a higher level, not just service or entry-level jobs, by connecting them to large brand-name companies. So I think that probably, your community would be interested in that as well.

Susan: Very much so. I really look forward to hearing more about that, and if there’s any way we can participate or help.

HeartShare NY: That’s wonderful. Is there anything else that you would like to add?

Susan: Well, you also asked me about the impact of transportation failures on other parts of people’s lives, and I wanted to say that a lot of people miss their health care appointments because of subway failures, because of paratransit failures. Therefore they are not getting the health care that they need. They’re having to wait longer to be seen for things that they should be seen for now. They’re getting marked down at doctors offices and clinics as no-shows, and that counts against them. It also costs an immense amount to the health care system when people are not able to show for their appointments because it means somebody else was not scheduled for that time and so the clinic, or the doctor, or the lab loses money by setting aside that time that could have been employed with finding someone else. So that is a terrible problem. We know that people with disabilities experience worse health outcomes, and we feel ourselves to be in worse health status than people with no disability. Definitely, transportation plays a role in that. Also when it comes to doing so many other things in life, it’s hard to fully participate. When your friends invite you out to dinner, only because of paratransit you show up when they finished eating, or because of the subway, you end up having to go home, or to beg off because you don’t have a quick route to get to them.

HeartShare NY: This is so outrageous.

Susan: Yeah, these are things that can really isolate a person socially.

HeartShare NY: Certainly. You’ve offered such a wealth of information to our listeners. If someone wants to reach you if they have concerns or want to join your efforts other than the advocacy hotline, should they email you? Should they visit a website? What can they do to get more information?

Susan: Well our website has a lot of information for people, and that is www.cidny.org