ARISE - EFR
The theme of the podcast is independent living and advocacy for people with disabilities.
ARISE - EFR
Inside Advocacy: How Change Happens from the Ground Up
Join host Bruce Drake of ARISE – EFR as he sits down with statewide systems advocate Phil Preen to unpack how meaningful systems-change happens in the world of disability rights and independent living.
In this episode, we explore:
- What it really means to be a systems advocate and how that role differs from direct service.
- Phil’s roots in community organizing, his own connection to disability via his sister, and how that experience shaped his work.
- The function of independent living centers—what sets them apart and how they empower people with disabilities.
- Real wins in advocacy: from improvements to accessible voting equipment to protections around source-of-income discrimination.
- The balance between policy-wonk detail and person-centered organizing, and why trust and credibility matter in this work.
Whether you’re a disability-rights advocate, policy-enthused citizen, or simply curious about how grassroots effort connects to institutional change, this episode offers a powerful look at how lasting impact is built—one relationship, one system, one community at a time.
Tune in to discover how empowerment, organizing, and policy intersect to move the needle on justice and inclusion.
This is the Arise Exceptional Family Resources podcast with your host, CEO Bruce Drake.
SPEAKER_02:Hi everyone, I'm Bruce Drake, the CEO at Arise and Exceptional Family Resources, and I am your host today for today's exceptional talk on disabilities. I'm excited to be joined today by our statewide systems advocate at Arise in EFR, Phil Preen. Welcome, Phil.
SPEAKER_00:Hi, Bruce. Thanks for having me.
SPEAKER_02:So, Phil, I don't think a lot of people are going to know what a statewide systems advocate is. In fact, until I became associated with a rise about a year ago, I didn't know what a statewide systems advocate was. Right. So why don't you tell everybody who's listening just a little bit about yourself and your background and then about what your role is.
SPEAKER_00:Sure. Briefly, the Statewide System Advocate is a program that's based out of the statewide coalition of independent living centers called New York Association on Independent Living. There's 15 of us spread across some of the larger independent living centers and make sure we cover all the state. Basically, to educate and organize people to change policy and look at legislation coming down the pike in Albany.
SPEAKER_02:Okay. And then so what's your background?
SPEAKER_00:I am a lifelong central New York resident.
SPEAKER_02:Grew up in Syracuse?
SPEAKER_00:Yes. Well, uh I grew up in uh Fayetteville, actually. Okay. Uh I was born in Syracuse. I always tell people I was born in Memorial Hospital.
SPEAKER_02:It was before even the I am not a local, so I do not know what that means.
SPEAKER_00:So uh but anyway, I uh yes, I've spent my whole uh other than college in Philadelphia, I've been here my whole life. And um there's a reason I stayed. I love it. Excellent. So and um I have worked a a couple different uh professions when uh my first real professional job out of college was uh I was a community organizer. I worked for uh local community organization, Syracuse United Neighbors, uh working with low-income people on the south and nearwest sides of the city, dealing with housing and crime and other issues like that. I have always had sort of uh a hand in the disability world.
SPEAKER_02:But before you go to your your connection to the disability world, what does a community organizer do?
SPEAKER_00:Well, a community organizer is uh someone who works with people to help them solve the problems that they identify in their lives.
SPEAKER_02:Aaron Powell So give us an example.
SPEAKER_00:So for instance, for housing, uh there's a lot of poor housing on the south side of Syracuse, and the reason the organization was formed. So um we would have a meeting, we would uh get people to talk about what you know problems they were facing in their housing, and then we identify uh the people who can solve those problems, bring them into a meeting, have the residents run the meeting, have the residents ask the questions, and uh get change that way.
SPEAKER_02:That's great. So you're working as a community organizer, and then at some point you filter into the world of disabilities.
SPEAKER_00:Yeah. Um my wife was working for Rise, and she had mentioned that there was an opening. But also I I've been uh aware of of uh the disability world for a long time. Uh I one of my part-time jobs uh I worked for Andi Community Living, which actually EFR took over and is running now.
SPEAKER_02:We merged. We happily merged with that.
SPEAKER_00:Yeah. Uh and uh I am still in touch. I was a DSP essentially. Okay. And um, you know, I still am in touch with the person that I worked with the most. Uh he is in a job at it was Peter's market, now it's topp's. Okay. I see him every week.
SPEAKER_02:And so you started as a direct support professional.
SPEAKER_00:Yes, I did. Wow. And um and like I said, I always had sort of an idea about what was going on. My sister was born profoundly deaf. Okay. And so uh I watched my parents have to struggle with trying to find her the services that she needed to to uh, you know, pursue schooling and and her education and and her employment. So in fact, my first contact with Arise was uh when she was having some difficulties. I went down to the Urize office, which was downtown at the time, and Big Brother was going to solve all her problems. And I came in there and said, What can we do for my sister? And they said, Well, the first thing is we should probably have your sister here, and we should ask her if she wants the help. Right. So uh that's that's sort of how I I I got into this uh this idea.
SPEAKER_02:Aaron Ross Powell Do you do you think uh your relationship with your sister and your sister's needs and your experience as a direct support professional, how has that impacted you and the work that you do?
SPEAKER_00:Uh you know, I I think I stop and think about how it's gonna affect a person individually. Uh you know, you run the risk of uh being a policy wonk and you in this job and you know spouting policy uh provisions at people. But I think if uh if you have some of that background, you understand that you're dealing with real people who have real needs and real problems, and you want to stop and listen to them.
SPEAKER_02:Aaron Ross Powell That's great. I think it's important always to stop and listen whatever relationship you're in. So you earlier in the in in in the discussion, you talked about uh independent living centers. Yes. Can you tell everybody what an independent living center is?
SPEAKER_00:Aaron Ross Powell Well, Arise is the independent living center for the four counties in in this area: Madison, Pigo, Kyuga, and Nondaga. And um there are 40 some independent living centers across the state. Uh and we work with people of all disabilities of any type to identify uh you know, it's similar to what uh an organizer does. They help them identify the problems they're facing and develop uh strategies to deal with those issues. Um, you know, Arise has employment, education, uh, you know, advocacy, uh both the kind that I do with uh policy and then individual advocacy for people who are, say, uh facing shutoff of their national grid bill, things like that.
SPEAKER_02:Aaron Ross Powell Is there anything that sets an independent living center apart from a typical provider of services?
SPEAKER_00:Yeah, I I I think it really is the sense of um empowerment of the individual. Uh we're not providing them the service as much as we're working with them together to do what we need to do.
SPEAKER_02:Excellent. And m my understanding too is that it's also a bit of a peer-driven service, and that a lot of our employees uh might have disabilities or as well or are facing similar things to the people that they're working with. We had uh uh education advocate uh on our last podcast who was talking about how she had children with disabilities, and that really helped her uh with the services that she was providing.
SPEAKER_00:Yeah. I I consider myself a part of the disability community because I I suffered a traumatic injury playing softball of all things uh for a prior company. And um I have swelling issues in my legs and things. So um, you know, I I think a large percentage of people who work in the independent living center either, you know, have relatives, children, or are themselves some members of the disability community.
SPEAKER_02:Aaron Powell Since we're talking about the other thing I should mention is that it we're also, as an independent living center, we're required that 50% of our board has a significant disability. So we're an organization that not only supports people with disabilities, but in a large part we're run and led by people with disabilities. So when you talk about being a statewide systems advocate, I know that you're part of a network of 15 different providers across the state or 15 different advocates across the state. But how does that impact you really? Are you dealing with issues that happen on Long Island or Albany, or how does how does a statewide network work?
SPEAKER_00:Well, we work on several different levels, uh a federal, state, and local level. Okay. Um I'm not dealing with uh problems on Long Island unless those problems on Long Island are going to be affecting everyone in in the state. And, you know, we have uh we get together uh on the phone and uh by Zoom to talk about issues that are coming up. So we have a good sense of what's going on across the state. Um I do two sort of things as a as a statewide uh advocate. One is education. I'm sending out emails and talking to people about the issues that we face, uh whether it's legislation that's pending in the state or uh in the federal level, uh the recent cutbacks uh in budgetary things in in DC. And then locally I think we do more of our actual organizing, actually changing you know, things that directly affect people. I think those are the things that when I look back on what I do, those are the kind of things I'm gonna remember.
SPEAKER_02:So at one point you said you don't want to be a policy wonk. So what do you mean by a policy wonk?
SPEAKER_00:Well, I someone who who you know dives into the deep sort of arcane, you know, trivia of of policy. Uh, you know, section eight, subsection B, those kind of things. Um I'm ha I happily do that. I I but uh I I need to remember and I and I force myself to remember that I'm working with people. And um like I said, the kind of things that that we're happy about is uh when he first started, we we got a uh a meeting with uh Mayor Walsh in the Uri's office, and we pointed out to him the abysmal condition of City Hall in terms of accessibility. And he scheduled a meeting with Deputy Mayor uh Sharon Owens, and we uh toured around City Hall and showed her our concerns, and uh, you know, took a little while because they're they're scraping up the funding, but you know, now we have a great accessible entrance, uh accessible uh men's rooms and the you know the place where they hold most of the meetings is much more accessible.
SPEAKER_02:So that's interesting. How do you know which direction to take in regards to the advocacy? You know, so I think some people listening are probably picturing you know marches down the street and you know, hell no, we won't go, you know, and then you know then there's the other side of that, which is the you know, the the meetings in in the conference room where everyone's very cordial talking about you know their issues. So as an advocate, how do you how do you advise, how do you determine, how do you help people choose the direction in which they're gonna go?
SPEAKER_00:Well it really does really end up a function of how the response comes from the person that you're talking to. Aaron Ross Powell Okay. And you know, to be honest, I think most of the groups that we work with, most of the agencies, most of the entities, have been more than willing to sit down and talk with us. So there hasn't been as much uh uh you know, picketing and you know, things in the street. For instance, uh many years ago, um members of the disability community, this is even before the ADA, now this is in the late 70s, chained themselves to a bus and uh refused to to allow it to move until there was ramps on the bus. And Syracuse was only the second city in the in the country that got ramps. Um so we started as uh pretty uh you know antagonistic between the two. Now we're we're you know, we work very well together. We're on their advisory committees, we we sit down and talk. If we need to have a problem, we can call them up, they'll they'll answer.
SPEAKER_02:And is that just uh the result of years of getting to know each other and starting to trust each other? And if we raise a concern, something's gonna be done about it?
SPEAKER_00:Aaron Powell Yeah, I think that's the case. I think they realize that uh we know what we're talking about and that we're not going to go away.
SPEAKER_02:So is that one of the success stories that you would share?
SPEAKER_00:Aaron Powell Yeah. I mean I think among the things I'm really proud of is uh before New York State did it, I think two years before we got uh the city to pass a law uh outlawing uh discrimination against people's source of income. So uh a lot of people were being told we don't take Section 8 for your rent. Okay. We won't take Section 8, even though a large number of our folks had it. So we got that changed. Um you know we're we helped uh pick the accessible voting machines with the Board of Elections in Onondaga County. You know, we we've done some good things.
SPEAKER_02:That's impressive. Phil, I I I really wish that we had a little bit more time. And I and I hope at some point I'm gonna be able to uh convince you to come back and share some more of your stories because I'd I'd love to hear a little bit more about how people can get involved in the process going forward. But we'll save that for another day. Um right now I just want to thank you for finding the time to talk to us. And ladies and gentlemen, that was Arise and Exceptional Family Resources Statewide Systems Advocate, Paul Prain. As always, thank you all for listening, and we hope you'll join us the next time as well.
SPEAKER_01:This has been the Arise Exceptional Family Resources Podcast with CEO Bruce Drake, recorded and produced at the WCNY Public Broadcasting Studios. For more information, visit our website at contactefr.org. You can also follow us on Facebook. Thank you for listening.