 Coming up on this edition of Abledon On Air, we talk about the self-advocacy association of New York State. What is advocacy, and how do we advocate for ourselves? And we talk about the history of the self-advocacy of New York State. All that and much more when Abledon On Air starts right now. Major sponsors for Abledon On Air include Washington County Mental Health, where hope and support come together. Media sponsors for Abledon On Air include Parkchester Times, Muslim Community Report, WWW, this is the Bronx.info, Associated Press Media Additors, New York Parrot Online Newspaper, U.S. Press Corps Domestic and International, Anchor FM, and Spotify. Partners for Abledon On Air include the HOD of New York and New England, where everyone belongs, the Orthodox Union, the Division for the Blind and Visually Impaired of Vermont, the Vermont Association for the Blind and Visually Impaired, Center Vermont Habitat for Humanity, Montefiore Medical Center of the Bronx, Rose of Kennedy Center of Bronx, New York, Albert Einstein College of Medicine of the Bronx, Abledon On Air has been seen in the following publications, Parkchester Times, WWW, this is the Bronx.com, New York Parrot Online Newspaper, Muslim Community Report, WWW.H.com, and the Montpelier Bridge. Abledon On Air is part of the following organizations, the National Academy of Television Arts and Sciences, Boston, New England Chapter, and the Society of Professional Journalists. Welcome to this edition of Abledon On Air, the one and only program that focuses on the needs, concerns and achievements of the differently abled, and we focus on abilities, not necessarily the disability. Arlene is not here today, but we'd like to say special thanks to the Self-Advocacy Association of New York State for joining us on this edition of Abledon On Air, and many of our partners and sponsors who have graciously helped us with Abledon On Air. Thank you for joining us on Abledon On Air. Let's start with the missions and goals, what are the missions and goals of the Self-Advocacy Association of New York State? Okay, hi, my name is Uli Ramos, and I'm from Self-Advocacy Association. I'm a grassroots president, grassroots field citizen, and from the New York and Washington, New York and Washington region. Now, our mission is speaking up for ourselves as others. We are an organization funded by people with developmental disability, for people with developmental disability. Our goals, help people with disabilities speak up for what they believe, including their civil and human rights. We support people with the IDD becoming active members of their community. Just to let you guys know if you don't know what IDD is, it's shorted for developmental disabilities. Okay, thank you. Okay, thank you very much. You tell me, now let's go into the history of the Self-Advocacy Association of New York State. How did it get started, and by whom? Okay, thank you. I'm Uli Sosavarino from Self-Advocacy Association of New York State in the New York City, which is the region as a grassroots field assistant. The Self-Advocacy Association of New York State, also known as TANI, were founded in 1986 by Bernard Cabello, a former president of the Willowbrook State School. Bernard lived at Willowbrook from the age of three until he was 21 years old. Willowbrook was an institution that became known as a horrible abuse and neglect that happened there. Bernard worked with, worked together with Javarro Rivera to show the world what was happening there. Now, to show the world what was happening there and may help to get Willowbrook and other institutions shut down across New York State. Bernard started our organization soon after that. Some people with disability could get support in speaking up for themselves. Between 1985 and 1986, Bernard and 12 other self-advocates served as the senior steering committee and worked together to make TANI a reality. On April 20, 1988, TANI recognized by New York State as a non-profit organization. So, could you tell me what does an advocate do and then what, since you're self-advocates of New York State, so what does an advocate do and explain your roles and what you do for the agency? Okay, an advocate is a person who knows their civil and human rights and help others by encouraging them to speak up when they have a hard time to do it. I said, go ask for your assistant. I would just basically write just now, but we also teach people how to, we also, one of our job is to teach people how to become an advocate and how to, we do that for many, many ways. And I think Lisa could get into more detail about it. Thank you. Okay. Okay. So, thank you. So, could you also tell me all right, so what exactly do you do for the self-advocacy association in New York State? Well, like I was, oh, go ahead, Lisa. Go ahead. Do you want me to do it? Oh, do you want me to do it? No, no, I'm saying both of you. Go ahead. Okay. Well, we're a grassroots field assistant. We teach people how to advocate for themselves and to help others. We mostly teach people and support them. So, what exactly do you teach them? We teach them a lot of things. We have different courses like CNU. CNU is a six-week course that teach people with disability all about self-advocacy and leadership. It also includes topics such as the history of disability rights movement, what is self-advocacy and what are rights, how to become a strong self-advocate, and what are self-advocacy groups and why are they important, and also how to speak up in your community and let their spreaders. We also teach self-advocacy 101 but it's a short introduction to self-advocacy. We also teach self-direction training. We share personal stories, right to right if you have to advocate for yourself with using public transportation. We teach technology, me, and teach how to use technology to connect with other self-advocates. Diversity training and ableism training. That's all that I have to say. Okay, so what exactly is this training? And what does it do? These are some classes that we teach to self-advocates about their rights and about the disability world. Okay, so let's go back a little bit. Okay, so the self-advocacy of New York State was started in 1986, and I understand about Willowbrook. Why did people really want to start advocating for themselves? Is it because of the maltreatment that happened there? Yes, and they wanted to get people to know that we're people too, and we matter in the world. Okay, Uli, did you want to add to that? No, I think at least I got all of it. Basically, there was a lot of issues going on when we came out of Willowbrook. They were not a state agency at the time. Oh, so there had to be state oversight, right, in order for it to close? Yes, we did have that when people came out of Willowbrook. So we needed something, and how self-advocacy got into it. Also, we were facing a lot of issues. If you would like to tell me, what were some of the issues? Okay, and we're still finding it. Okay, so what were some of the issues that were going on in Willowbrook, if you want to add to that? Sure, and they were still, like I said, they were not state oversight. So we, I mean, they're still going on to the like staff. I mean, one of them is staff, it's a staff storage due to low pay. Basically, staff, that's one of the main issue today. And the main issue was that when they came around, when they came around, people are leaving their jobs staffed because they're not paying enough money. And that seems to be a big problem all across the world. It's not, like for example, I'm here in Vermont. And nursing homes and rehabs and other places like that, there's lots of staff shortages. And they're, and the staff is having, the staff is having to do 816 or, they're doing like three, some of them are doing 16-hour shifts, you know, because there's not enough staff to go around. And that's one big problem from nursing homes to, to the little, that is a big deal. And also that, also that one of the issues then they'll get paid enough. So people, so that way over time, like in the nursing homes, or in what, because not everybody could do the job they do for us. And there's some staff is very, very intimate. Also there's sensible housing, which is a big issue, a big issue, because some of, you know, we might, especially in New York City, where we are live, and probably they might have some problem also. But the problem is in a sensible housing, that some building, they don't prove apps. So people, I mean, like take this up with my, my apartment. My apartment, you can pay a person with a disability, cannot really get into my building because they know ramps around. But that's a, that's a law that they're breaking. They're breaking that law. And also I find out for my own research, a little time ago, that there was a law in New York City that at the 1930s or some, you cannot put ramps in buildings in New York City. Well, here's the thing Sergeant Ruff, they have something called, and I've done research on this numerous times, it's called a grandfather clause. If a building is, oh, let's say a church, okay, some churches, synagogues, mosques, any, any, any religious building that, you know, because there's a, because New York City is a, New York City is a melting pot. So there's a lot of people that need to go places, okay? So if a building is over 100 years old, you have to get either the state or the federal government to give you, to give you number one to get permission and number two to give you money to put a ramp there. But by law, now, if the ramp isn't there, some of these construction companies that put these buildings up, they have what they call makeshift ramps. Either the ramp is on wheels or something like that and it goes to the building. But it's a law now that you have to have a ramp. It becomes a problem when it's too grandfathered, when the building is way too old. Example, it took, I think, about 15 years for this part of Vermont. We have an art gallery, you know, paintings and things. It took 10 to 15 years just to get an elevator. So if the building is too old, then it becomes a problem. But yeah, I see your point there. So, yeah, I mean, that's... Go ahead. Sorry, also jobs. Tictically, and I know some of us do work for other, tick-tick-tickly, the polls out there saying more people with a mental disability want to work. But there's not enough jobs going around. And I think it's... And that is also a big issue. Now, here's the thing, another big issue. You guys are the self-advocacy association in New York State. A lot of the train stations in New York are not, train stations don't have elevators or not accessible. Is there anything that you guys are doing or any campaigns that the self-advocacy association in New York State is doing to help with that issue? Because that's a big issue in New York. Yeah, I mean, I know we have caught that with the MTA, which is the... The self is... And they're making changes. So... And they are trying to keep everything up today, especially elevators. Because one of the problems, like you said, perfect our potential. It's a big problem in New York City. And what they're doing is... They are... Sorry. Accessorize is another big problem. They're in charge of the elevators and they are keeping up. And I think they're pulling, I know for a fact, they're pulling some elevators in stations and keep maintenance. Because sometimes it could be they break down a lot. So that is one of the... That also that is... That also is one of the problems we are facing. Also, the other one, I don't know if you guys have accessorized. Well, it's called piratransit, yes. Yeah, here it's called accessorized, piratransit. And we have our own, but they're always delays. They're always... They're not as reliable as some. They're working on it, but they're not as reliable. And that is one also they have to do with people moving around. But also, it's... Also, other issue is privacy and choice, which let me give you an example. If you live in a house with a lot of people, you don't have the privacy that you want. Privacy, yeah. Privacy. Don't they doing work or doing work or being a day program? Sometimes you don't want to be left alone. You don't want to deal with people. I mean, I don't. And I'm maybe out there. I'm maybe out social. But sometimes you don't need a place where... You need a place in the house. If you don't want me asking, do you live on your own or you live in a group home? I live on my own now. But before... When I started this about nine, ten years ago, I used to live in a separate area, but because of my work, I hear a lot. I hear a lot of people, a lot of visual. They do live with a lot of people in their houses. And they talk to us about it a lot. And they tell us about it. And some of the houses don't... Some of the houses don't... I mean, we are trying to get the state to oversight more on it because sometimes they don't listen to the person with a disability, which is sad. But some houses do that and they don't understand that the person wants a little space in the house where they could be alone sometimes. And like we all do. And they don't have no privacy. And also, accessible voting sites, which means... Accessible, right? Can you repeat that again, please? Voting sites. What? Oh, voting sites. I'm sorry, I misunderstood you. Sorry. Yes, yes. Sorry about my space sometimes. It's okay. Go ahead. Because one of my denacts is my speech. But basically, what we say there? Because you had the right, at the 18th, you had the right to vote. Even if you have disabilities. But the problem is that some areas, even if you can't vote, you can't get into the buildings. Because some of them maybe don't have ramps or maybe just stairs. So that is also very important because everybody has the right to vote. And they cannot do it if you're a person in a wheelchair if you deal with that situation, which is hard. Well, they may... So let me explain in Vermont what they're doing is... For me, I'm visually impaired. And I also have a hearing problem. I'm getting a hearing aid soon. So what they do in the voting polls in the... They give us a tablet. It looks like a computer. And you can just... They give you instructions on what to do and then you can vote. So if you have problems, they're starting to do that for the voting polls. It never used to be that way, but if you need help, they're starting to do that. But again, it took a long time for that to happen. Like I say, also in New York City, also we have some, like you say, machines where they are doing that. But you have to ask for them. Don't give them out just... And also, you have to ask for them. If you don't ask for them, they might have them, they might not have it sometimes. Which is sad. Also, the problem is sometimes many is about the billing access to it. Because how can you use that machine if you can't even get into the billing? Yeah, that's true. That is a big... issue right now. So one of those. And this issue, yeah, we're going out for years. So we took a long way, but we are getting... slowly we are getting there. Slowly. I mean, I'm not saying it's perfect, a system where we're living, but we are... there are some improvements, but there's still a long way to go. So both of you... So both of you now, what are some of the biggest issues that the self-advocacy association of New York State is working on? And because, yeah, I mean, there's just a lot. I mean, we've come a long way as far as advocacy is concerned, but it's just... there's certain things. There's, for example, there's too much abuse still going on in some nursing homes and other places. There's not enough staffing, like we said. And I mean, what are some of the biggest issues that you guys are working on? And there's still, I think, 25 states that are still institutionalizing people with disabilities. It used to be 39. It went down. It used to be 39 states. But what are some of the biggest issues that you guys are working on? Well, like I say, those are the big issues at this moment that we advocate, but there are a lot more that we do touch on them, but they're going to take time. Mm-hmm. And it's not easy. Like I say, it's not easy to change, and we are working full of change, like you, like we all are. So let me... So that's why it's hard to... But these are some of the top issues right now that we work on. And it's getting better, but it's not there. Mm-hmm. Is there a reason why it took so long? Well, the government sometimes is slow. I mean, and also it's changed. It's hard for people anytime. I mean, I don't like change, actually, myself. Mm-hmm. And I'm a person with... But the government takes time to do a lot of the stuff that you have been done. But also, I think it's just time and patience. Mm-hmm. But that... They're going to take time, but that is what we advocate. And there are more issues out there every day, and we learn more. And we are working on as... We are working on to make sure that they hear our voice, our self-advocacy. And that's why I would jump. That's why we go with... That with self-advocacy, social New York State is a very... It's a very important because we do have a table. We do talk to our state agency which is OPWDD in New York State. Do you think... Go ahead. And I guess the best I could do, Larry. Lisa, is there anything else you want to say towards that that... What do you think needs to change as self-advocates? You guys are self-advocates. What do you think needs to change in the system? I think Lisa said to us. I'm asking her. I'm asking her. Go ahead. Oh, I'm sorry. How, Lisa? The... thing that... because we have disability we don't... don't matter that we don't... all we need is to cut away and believe us. But we're people too. We're... we matter. We have disabilities. But we want to work. We want to be in the community. And we're fighting for equal rights. And we have rights too. Okay. Uli, did you want to add more to that? I think Lisa got it. Okay. Oh, something happened to... Oh, okay. Oh, by the way. Okay. So what is... we have a couple... we have about 13 minutes left. What didn't we touch on? Is there anything that you want to say that's really important to... for people? Why is it so important to become an advocate? Um... Uh... You know, to advocate. So why is it important for people to become an advocate in their own rights? Like I said, we're people too. We have rights. But why is it so important for people to speak up for themselves? Why? Okay. I mean, Lisa, you want me to take... Yeah, go ahead. Go ahead. I'm sorry. Because we need... we need to take... we need to take a stand about our own future. Whatever... that... I mean, we all have needs. But if we don't... like I said, one person could be great. Like, one person could speak. But there are other... if we pull all of us together and become an advocate, the government will listen to us. That issue that matters to us every day. Housing. Jobs. And also it's very important because I think we need to speak up because it's time for us to take charge of our own lives. Okay. Um... Do you think... How can I put this? Um... I understand that there are some people that can't speak up for themselves. Parents and other caregivers... help. Okay. Do you think even though a person is... not so independent that they could still do stuff with themselves and become independent? Yes. That's what we teach. We teach people who can speak and communicate but somehow in some way they can communicate. And that's what we're teaching them. And we're also here to advocate for them too. Um... Is there... Also, I just want... Just one more point. Just one more point about that and then I will share up. No, it's okay. No, no, no. Keep going. Okay. Even numberable person like we have... Even they have brains. Say that again. Repeat that again, please. Even numberable person like cannot talk like you and me talking right now traditional way. They still have a brain. They have a brain. And they need to... They still have a lot to say. And it's very important them to hear them too. Not just me and Lisa because we are very out... We could talk like this. So they have their own way or speaking like Lisa was saying. So my point is everybody had... Everybody was born with a brain. And they had the right to speak. Whatever they need to say they say in their own way. And we had to listen. So what are the future goals of self-advocacy association in New York State? Okay. We continue making sure people with developmental disability have a place at the table with decision makers. And have their voices heard. We also continue advocating for the support and funding needed for people with ICD. We continue supporting self-advocacy to be part of their communities. We also continue supporting self-advocacy groups now in the future across New York State. Okay. Well, before we go where can people get in touch with you guys? The address and the phone number for self-advocacy of New York State? Yes. You can read just at our office at 25 the first number in New York New York one zero zero zero four and our number is six four six eight nine six one nine three eight Okay. So six four six go ahead eight nine six one nine three eight Well, okay. Six four six. Okay. Repeat that again for our viewers. Six four six eight nine six one nine three eight Okay. Well, I would like to thank you guys for joining me on this edition of Abledon On Air and for more information on Abledon On Air you can go to you can also Google the Self-Advocacy Association in New York State and go to www.Sanus.org that's s-a-n-y-s .org www.S-a-n-y-s .org and for more information on Abledon On Air and what you've seen today you can go to www.OrcaMedia.net that's www.OrcaMedia www.OrcaMedia.net www.OrcaMedia.net www.OrcaMedia.net www.OrcaMedia.net I'm Lawrence Seiler See you next time! Major sponsors for Abledon On Air include Washington County Metal Health where hope and support come together. Media sponsors for Abledon On Air include Community Report, WWW, this is the Bronx.Info, Associated Press Media Editors, New York Parrot Online Newspaper, U.S. Press Corps Domestic and International, Anchor FM and Spotify. Partners for Abel DeRonaire include Yehad of New York and New Maryland where everyone belongs, the Orthodox Union, the Division for the Blind and Visually Impaired of Vermont, the Vermont Association for the Blind and Visually Impaired, Center Vermont Habitat for Humanity, Montefiore Medical Center of the Bronx, Rose of Kennedy Center of Bronx, New York, Albert Einstein College of Medicine of the Bronx, Abel DeRonaire has been in the following publications, Park Test of Times, WWW, this is the Bronx.com, New York Parrot Online Newspaper, Muslim Community Report, WWW.H.com and the Montpelier Bridge. Abel DeRonaire is part of the following organizations, the National Academy of Television Arts and Sciences, Boston, New England Chapter and the Society of Professional Journalists.