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The Atlantic CIL Podcast
The Atlantic CIL Podcast
Episode 39: Carolee Morano
Discover the transformative journey of Carolee Morano, who shifted from a successful 14-year career in international banking to becoming a passionate advocate for people with developmental disabilities, In this episode, we discuss the Atlantic Center for Independent Living and the Mental Health Association in Atlantic County’s Civic Action Engagement Initiative and how people with disabilities can become more involved in the community.
The Civic Action Engagement Initiative is funded by the NJ Division of Disability Services (DDS), New Jersey Department of Human Services (DHS)
Links
1. https://www.mhaac.info/ubw-how-to-join.html
2. https://inclusivehealthycommunities.org/
hello everybody and welcome to another edition of the atlantic silk podcast. I'm here with one of my new friends that I met this year, carolee and Carolee, how do you say your last name? Morano Morano, carolee, morano. And before you know, as we got into Know and Share, we found out we had a lot in common. We both came from the independent living, the IL, backgrounds. So, carolee, let's jump right into it. How did you get involved in independent living and disability advocacy?
Speaker 2:Okay. So after a 14-year career in international banking, I had my daughter and I became an at-home mom for the first six years of her life and I wound up volunteering for an organization, a nonprofit, that did services for women and children primarily, and I fell in love with nonprofit mission work and then I reached a point where I was looking to be employed full-time, and my first full-time job in human services was with an organization that served people with developmental disabilities, and I was there for eight years, expand my own understanding and experiences of the needs, issues, barriers, challenges, rights you know, everything to do with people who had developmental disabilities and many of them had multiple disabilities and who were living in group homes. So there were issues of, you know, access, transportation, all of the issues that we typically associate with disabilities in general. And then I it became time for me to move on and I found my way into the SIL world. I was working for can I say the name of the SIL, dawn? Yes, you can, you can.
Speaker 2:Okay, I was working for Dawn Center for Independent Living and I will tell you it was a wonderful job. I had an amazing boss, carmela Slavinsky, who is amazing yes, she is and I became the independent living supervisor. So for the IO program, independent living supervisor, so for the IL program. I attended meetings with the New Jersey SILs. I got to know the SIL community, completely fell in love, was absolutely fascinated about the history and in fact I was indoctrinated immediately with a wonderful presentation where I got to hear Ed Roberts speak and see all of the history of the Sill movement and I really began to deeply appreciate the civil rights issues among people with disabilities.
Speaker 2:And again, that was a wonderful stint and I did wind up changing employment. It really had to do with family and personal circumstances. I needed to be someplace closer to home and I wound up again at an organization, a very big organization that serves people with developmental disabilities, also youth in the foster care system. So I continued that disabilities work. One of the cornerstones of my work throughout this career has been grant writing, but I also and I've been involved in administrative functions like events and development things, event planning and marketing communications. You know that aspect of the business which gave me an insight into some of the government issues as well.
Speaker 1:Yes, that's awesome, and you know we love the Dawn Center. And how long were?
Speaker 2:you at Dawn. How many years I was there. Almost five years, wow, and you were also in international banking.
Speaker 1:I didn't know that. Five years, wow, and you were also in international banking. I didn't know that 14 years.
Speaker 2:Yes. I started as a clerk typist and left, as it was a very it was a $4 billion organization. I left as one of many, many assistant vice presidents, but like. I said, I came in in my early twenties as a clerk typist and you had a very rewarding career and that career has helped me greatly in nonprofit, because there's not a tremendous amount of financial expertise in in in general I'm not every organization so I have been able to bring that to to my work, especially in grants and development, which is the money.
Speaker 1:Yes, which is important because you can't do any of the work without understanding the money, as we talk about on my podcast all the time. And now you're with the wonderful Mental Health Association in Atlantic County and we are working on the Inclusive Healthy Communities Grant, which many of my listeners have heard about before and where we're doing advocacy and teaching people advocate how to do advocacy work. So talk about that. How did you get connected to the mental health association and how are you enjoying uh, this grant?
Speaker 2:work well. Well, it's amazing and I'm just gonna say you know, my connection was I had been receiving services. I had been ill for some time. I became unable to work, so I left my career in disability services much sooner than I thought. I was ill for some time. I began to recover, but in the meantime I had been receiving services from the organization, and the services that were that I was most engaged in while I was not well were there UBW, united by Wellness Groups, which is which now I'm.
Speaker 2:I am facilitating some groups, and that includes groups for the Inclusive Health Communities sorry Civic Action and Engagement Program. So that's how I got involved there and that's been wonderful. And I you know I am this I've never worked or been involved with a Rutgers grant. I don't think I've ever made a Rutgers grant application, which is kind of funny since I've written about 250 grants. But you know I am sort of aware of some of their work in wanting to fund community health solutions and you know. So it's very much an honor to be doing this work and to find out that I would be doing it with a cell and have connection back into the cell world, which is a very, very unique niche services. Um, it's been. It's been wonderful. And to, to my great joy, the people who are coming to the groups are engaging.
Speaker 1:All right, yeah so let's talk about that. So we are really trying to in our grant, get more people with disabilities involved in civic engagement and we're teaching them advocacy skills and how to get involved in democracy, how our government works. So really talk about you know, just briefly, people ask us all the time how do I get involved in advocacy? And, as somebody who's done a lot of this work, what would you tell them? What would you say to them?
Speaker 2:I would say that many of the amenities that we enjoy now, that people take for granted, did not exist without advocacy. That people take for granted did not exist without advocacy In the disability world. You know, in the early 1800s, you know it just there was no understanding In the United States. There was just no understanding about disability and, to be very honest, I think people didn't really think of people with disabilities as people in the same way that we think of other people. And it was an enormously hard road of hard fought advocacy and you know so. Those are the people who came before and made us possible, made it possible for us to be where we are today, and yet there is so much undone.
Speaker 2:So we need advocates, by the same token, being engaged in the community, even if you're not engaged with advocacy per se. But maybe you want to be part of a coalition that helps keep the streets clean. It could be as simple as that beautifying parks. It doesn't necessarily necessarily civic engagement, doesn't necessarily have to be political or advocacy or any of that, but the idea of being engaged in the community is certainly an important aspect to wellness, um and so so being able to encourage people, to make new connections and maybe do a little volunteering and learn things about themselves that they didn't know is, you know, I think, very important and, like I said, I'm surprised. A couple of the people who are in these groups I know from other groups and I'm just heartwar warmed and surprised to see them engage, you know so. So I have high hopes.
Speaker 1:Yeah, and it's important to know I will put the information of link to United by Wellness.
Speaker 1:Anybody across the state or even across the country can join these workshops in these groups.
Speaker 1:So if you're hearing about this, I know my podcast, I have had people from Alabama hear my podcast so I know people can be like, oh, I'm not in New Jersey, but if you're interested in this topic, you know it's definitely worth coming.
Speaker 1:And you know, I think what you said is really key because I think sometimes when selves talk about advocacy or when organizations like the Mental Health Association talk about advocacy, people right away go to like political and a lot of people may not be comfortable with that, but like civic engagement could be attending a pride rally or starting a book group or you know it doesn't have to be, you know, calling your congressman, not that that's not a great thing to do, it just doesn't if you're overwhelmed by this discussion, it doesn't have to be that. And I love what Caroline said about and she started this podcast by talking about the history and really the history of independent living and it's all about advocacy and people getting involved. So talk about that. Talk a little about the history if you don't mind about where it stuck out to you and why it was so engaging.
Speaker 2:So I'm going to start by saying that to my fascination, going from, you know, having worked in the SIL world and now working in the mental health world. There are two separate advocacy histories and I'll just make a comment that I am very happy to see people both with physical and invisible disabilities starting to come together to increase their power. So with the disabilities history, you know, people didn't even understand that people with disabilities are people with abilities who have a right to access everything that anybody in the community can access and that's a constitutional right and that was a hard-fought right and disabilities rights. It was part of the civil rights movement but it sort of got excluded and it wasn't until the 1990s, when the ADA was passed, that we finally had real legislation with Keith not too sharp, unfortunately, that happens with a lot of laws but to really make sure that the rights of people with disabilities were protected.
Speaker 2:And one of the things that I a film, it was a PBS production I believe and I'm Lives that Matter I'm trying to Is it Lives Worth Living and I'm lives that matter I'm trying to.
Speaker 2:Is it lives worth living, lives worth living. And it really drove home the idea that many misinformed or uninformed people in the community did not even consider that people with disabilities saw themselves as people who were alive and had a life to live and and had aspirations. And this film just it really drove that home. You know I already had been in the field and developing a deep understanding of that and really appreciating that. But there was a scene in the film where there were protests arranged and people were setting aside their kings and their wheelchairs and crawling up the White House steps and it was a very visceral visual demonstration we don't even have access to our government part of a movement that raises awareness to give people who deserve and intrinsically have the same rights as anybody else and to make sure that those rights are recognized and honored and that people with disabilities are not excluded.
Speaker 1:Right, that's a great movie you reference. Also, another one is Crip Camp. That has a lot of the great history that's in Netflix, so it encouraged everyone to learn about this stuff. And you're right, the history really does capture you and it really does. It can really make you just totally engrossed in this work because you understand the hard work that was done and the groundwork that was laid and the success that was had. The groundwork that was laid and the success that was had because you know the the idea of even us having this discussion on a platform like zoom is progress, you know yes if you know the history and know the uh, know the stigma that used to be associated.
Speaker 1:That is still out there, but I would argue that there's been tremendous progress from people in this award is, even though there's tons of work to be done and what do you think some of that work to be done is carolyn, what would you tell people? I know it's hard to think about because there's so much, but what would you? What would you? What would you tell people if you can give them an idea?
Speaker 2:well, I, I, I would tell, and I actually, in my work, have been telling people that we all have a spectrum of abilities and they're all different and whether you have a physical disability or an invisible disability or not, we all have strengths and weaknesses and I think you know one of the things is to make people understand that people with any kind of disability can be a very valuable asset to the employment community and to, in general, the community in some form of engagement, as volunteers, in some form of engagement as volunteers, just just as people to be friends with and to meet people in in your churches or synagogues, whatever it might be that you know, every, every person brings value to a situation and I would want especially people with disabilities to know that, because often stigma there's also self-stigma and the product of external stigma, and I want people to find their worth and employers to understand that some of those unique abilities they've been statistically proven.
Speaker 2:People with disabilities tend to have greater longevity, stay in their jobs longer. Unfortunately, that comes from a special gratitude for being given the chance to work, which they should have had the right to in the first place, and also I think people with disabilities are amazing problem solvers because they've had to figure out how to get around in a world that does not accommodate them at every turn.
Speaker 1:Yeah, I think those are great points and really that getting over that ableism, which means disability and discrimination, and the internalized ableism that I think every person with any type of disability goes through just learning that there's nothing wrong with them and that it's society that needs to change, and that, of course, they have, you know, to do their part too, and to live their lives the way they choose too, to live their lives the way they choose to.
Speaker 1:But it's, you know, I'm reading a book, I'm listening to a book now called Disability Pride and they talk about that process of sometimes you know wanting to hide your disability and you know not being fully comfortable with it yet if you can't hide it, so you really have to learn, as a person with a disability, to overcome those things, which is totally unfair because nobody else without a disability has to do that. But it's about learning, teaching people, I think, society that disability is a part of the human process and it's a part of human nature and there's nothing wrong with it. Which is why I always use the word disability I don't like words like differently abled or anything like that because disability is just a natural part of life. I mean, if you live long enough, you're gonna have some form of disability eventually. So I always say you should be invested in this, not only for moral reasons, but for strategic life reasons as well as well not just yourself.
Speaker 2:It could be, you know, and not that we wish this on anybody, but it could be, you know, and not that we wish this on anybody, but it could be your mother, your father, your spouse, your best friend, your child. Disability there are proven statistics about this as well, and a high, high, high percentage of the population will experience disability, at least for a period, and some, when they hit that point of experiences, are not going to turn back. It will become a permanent disability. So it does affect us all and it does behoove us to understand that, so that we don't suddenly feel reduced when this very natural phenomenon happens. I've come to the conclusion that anything that happens in nature is natural. Yes, anything that happens in nature is natural. By definition, it's a no-brainer.
Speaker 1:Yes, yeah, exactly, and you know, and 25% of the population has a disability. You know if somebody you love or you is going to have an experience with disability in your lifetime, so it's just so important. And now I'm going to jump to really talking to our decision makers and our elected leaders and I know you have experience with that and, of course, people with disabilities. We want more to become those decision makers and elected leaders and that's the purpose of our grants in the long term. So talk about that, because some people with disabilities are so intimidated by that. Talk about your experience with that and sort of how to go about. I know I always bring up calling a congressman, but you know people do think about that. How do I even talk to my decision maker that can have some effect on a policy that I'm concerned about.
Speaker 2:Well, there are definitely a set of skills that make being involved in speaking to a legislator whether it's your, you know. So there's a basic set of skills, but there's also almost like a formula to how to get and keep a legislator or public officials attention, because they have a zillion people who want to speak to them about things that they're passionate about every day. So some of the skills that we've been teaching under the CAEI project, civic Action and Engagement Initiative, are those wide ranges of skills. You have to have a little understanding of how government works. You have to have a little understanding of how to do research to follow a bill that might that's being considered to be passed as law. It might be as simple as you know what to wear if you're meeting with a legislator. Even on zoom, you know you might not see what's on the bottom.
Speaker 2:but you know the top should look the way you look, yes and um, I mean even just engagement and eye contact. But also you know how to find your legislator, how to write a letter to your legislator. And I really think right now in a couple of our groups under this initiative, we've been talking about storytelling, which in the business world they call it the elevator speech. Storytelling which in the business world they call it the elevator speech, but it's getting what you want to say down to three to five minutes, because at that point the legislator is done.
Speaker 2:So this is a difficult thing because we have stories and we have things that we're passionate about changing because we've been hurt by the system, and you know. So we want to tell our stories, we want to tell the whole story so that they understand. But that formula does not work to get your foot in the door, to get the legislators' attention. So that's a very important part of what we teach also, and you know, also just helping people find local coalitions, local community meetings, anything that they might want to get engaged with in the community. We will help them find those connections and teach them how to find them for themselves as well.
Speaker 1:Yeah, because that's a hard part too, and I think you really articulated it really well about how it's understandable that, as a person with a disability, you want to tell your whole story, from beginning to end, because you think all the details are important and not that they're not important, but honestly, most legislators and most humans do not have that long of attention spans. So you really want to get to your point quickly, tell your story and then again you really want to end it with what you're started and end it with what you're asking for, because legislators a lot of times do want to help and decision makers a lot of times do want to help, but they don't like that feeling of when they're just being, you know, the kind that told something but not really a clear idea of what they can do to make it better or have some impact.
Speaker 2:So that's true. That is very important because many of us may feel that when we go in and tell our stories, they'll figure out what to do.
Speaker 2:And the reality is they're dealing with thousands, maybe tens and twenties of thousands of real issues that people have heartfelt concerns about and whose lives are impacted, and maybe, you know, in a very negative way. So they don't know every nuance of the existing laws. They don't necessarily. They certainly don't know every nuance of every issue. So you are actually bringing that to them and because there are thousands, you have to be in a position where you're keeping their attention for that short time they have and getting that point across by saying you know what at the end you're explaining.
Speaker 2:For example, I'll use affordable housing as an example, because we've been doing that so often. Disability, although it can relate, but you know we need more. I have a, I have a grown daughter with three young children. She's a single mom. She is having trouble finding affordable housing. We need more. There are weighing lists, et cetera, et cetera. So that's the story. But what we really want and we may not even know this initially when we're developing our story telling for a legislator what we really want is for them to ask to support a 15% increase in the county budget for affordable housing, for example. Correct, so that's the thing is to identify something tangible that you can ask for. That will help the situation and before you even start your speech, you know that's what you're getting to, because, in the end, that's what the legislator is going to pay attention to. Is this something he could sink his teeth into?
Speaker 1:Right right, right right, because they want to. They want to, so you want to connect to them with your story, but then they want to know again what they want you to do with it. So do you want them to support? You know?
Speaker 2:there's a housing development.
Speaker 1:That's coming up for a vote. Please vote for it. What do you want them to do is, I think, a really important part, and you know we're also. We just finished a workshop about the importance of building relationships and talk about that because I know that some of our listeners and some of our people in the disability world and I understand this may be kind of disillusioned with the process and the political and decision-making process process and the political and decision-making process. So it can be very easy to go into these rooms and not want to get really frustrated with your legislator and to not really want to build those relationships with the people who make decisions and also the other people in the community, but talk about the importance of that. That you need to. You know also know when to be diplomatic and to bring people to your side, even if you disagree with them on some things.
Speaker 2:Absolutely. These are people who can help and often you might have some differences, but who you might engage on a common ground, who have the power to make change. And so these are your allies. They may not be your best friends, but they can be very important allies in realizing these things that will make your life and the life of people who have experienced the barriers you have better and, I think, a perfect example to drive home the idea that what you do today you might not see the results, you might not even see it, but the conversations start as seeds and the fact that there was tremendous advocacy and protesting and all kinds of civic actions that were taking place back in the 60s for the rights for people with disabilities. Those seeds were planted. They did not see the results until, finally, the early 1990s, or actually the late 90s I forget the year.
Speaker 1:Early yep 1890s.
Speaker 2:Yeah, you're right. So that's an example, and some of those people who were there, maybe 50 years old, back in the 60s, maybe they weren't even here anymore when finally that law got passed. And we know that law isn't perfect, so the work isn't done, but everything you do is a potential seed. You can't give up. If people had given up in the 60s because it didn't happen by the 70s, you could not have that legislation today.
Speaker 1:Yeah, and that's exactly right, and that's true for any successful piece of legislation that has benefited people. It takes decades, and decades and decades and you can't you know you can get frustrated, but it's important not to give up and not to see your work as useless. And one of our participants did use that phrase planting seeds. I mean, you can get very disillusioned, but you're planting seeds and you know, if you're advocating for more affordable and accessible housing for people with disabilities in your neighborhood, for example, and you're going to get pushback because they're going to be, what about traffic? They can't afford this.
Speaker 1:But those people are members of the community too, so you're going to find a way to work with them and to turn a lot of your opponents into allies, and there is a way to do that, and there is even a way to. Somebody can stay your opponent, but you establish a working relationship with them and they respect you. And maybe they disagree with you about housing, but they are all for you know more accessible beach access and you find a way to work on that issue with them instead. So you know, just always be kind to people. It doesn't mean you can't be strong and have your your, make your point, but building relationships is essential and and, um, I know we're going to talk about this, uh, later in our workshops, but really talk about and this work can be exhausting talk about the importance of self-care. You touched on mental health and I think that's a good way to kind of end our discussion. Is, you know, people can get very, you know, disenchanted and disheartened by this work, so give people some tips on how to keep going.
Speaker 2:So, just like people can have physical disabilities that is the word that we use people can have invisible disabilities. Obviously, mental health is one of them. But all people have health, whether physical health, mental health, emotional health. All people have health and in the mental health community there's a concept of the eight dimensions of wellness. I actually brought it into a curricula for the SIL that I was working at, because they're not really separated. In order to have whole wellness, we need to have our best wellness in mind body and spirit. So that means that self-care becomes extremely important and you know it can be difficult to do this, especially in a world that treats that has this concept of special needs, as though someone who is in a workplace and might need some downtime because stresses are high I mean, everybody has that. They take days off, they take vacations. It's not different for a person with disabilities. So we have to understand that we're not, that we should not be ashamed to ask for what we need and to take what we need and to know when. You know when we've pushed ourselves too far in the mental health community.
Speaker 2:One of you know, one of the things that has emerged as a tool in a movement is something called a RAP plan, a wellness, recovery and action plan, and in that plan you very basically identify what do I look like and sound like and do when I'm well, what? What are the signs? How does that change when I might be sliding or sinking or not doing well, and then, and then you write down what are the steps I need to take at that point? And then there's a, you know, a crisis plan that, if it does emerge to a crisis level, what should should be happening, what you want, what you want in your life, if you are not able to articulate at that point in time what your wishes are. So it's like a, it's a plan and frankly, I think everybody should have one, not just people with a mental health or any other disability. We all need to know when we are having the signs of pushing over the limit and need to keep ourselves well, because that's the only way we get to keep doing what we do.
Speaker 1:Yeah, I think bringing up WRAP Wellness Action Recovery Plan is a great idea. And send me some information. I'll put that in the link. I'll put some so people can look into that. Because you're right, people need to really do what they can and take care of themselves, and I know it's easier said than done. And you know we've really been through a lot as a society in recent years of the pandemic, like I always think about the trauma we just casually all went through and lived our lives and you know there's still lingering effects of that and you know, being with a disability, it can be even tougher.
Speaker 1:And I love what you said about how we need to. The term special needs drives me, triggers me in a lot of ways, because we're not asking for anything special. We're not asking for anything that any other human doesn't need. By the way, taking breaks is good because it helps you be more productive. Like you know this whole concept that you need to go and, go and go until you're physically and mentally drained and ill. I see us getting away from this society, but we need to continue to get away from it because it's not healthy and it's also not productive. So I think that was a great way to close it. We're going to end here and thank you so much, carolee. If you have anything else you want to promote or say, please wrap us up here. And this was a great discussion. I'm so glad you found the Mental Health Association. I was so happy when I heard you work there because I'm like, oh, another cell person.
Speaker 1:It's a good bridge for the project. Well, you know, it's just such a. Like you said, cell services are so different than all other disability services and it is such a great group of people we have here.
Speaker 2:Carmela used to call the Sills the best kept secret, because people don't hear about them. There's not enough funding for them, so there's not a lot tons of money to go around putting up billboards and you know whatever. So now we're going to get off into a thing.
Speaker 1:Um, I always say now we're gonna get off into a thing. I always say I love ed roberts, but I would probably rename. Would rename this because the name is sometimes confusing. People think we're assisted living or yes, people live here and nobody lives at your cell. We're resource centers.
Speaker 2:So you know, the cells are actually about how to get people out of living in an independent life with whatever sports they need in the community. So there is that I. I won't call it a misnomer, but I'll say it's. It might be somewhat misleading because yes it's confusing that residential thing will make your center.
Speaker 1:Yep. So, like I said, if you have any other thoughts, please wrap us up and then we'll. I will see you at our next IHC meeting and if anybody wants to come, we're going to have information in the link. I won't give the dates and times because I don't want them to be on this episode, and then we change it, so please just follow the links.
Speaker 2:So the last thing I wanted to add is that idea that I hope that each one of us finds a way to find our self-stigma and cure that. And an example I want to give is everybody does have workplace accommodations. People don't necessarily recognize that, but if I was four foot nine and I was working in a grocery store and I had to stock a top shelf, I would need help. I would need an accommodation. I would need my employer to understand that I can't stock the shelves. So I need an accommodation that I team up with another employee and maybe I do a piece of their job instead, because they have to do this piece of what would have been my job otherwise. So we're all just like everyone else and don't let anybody else ever make you think otherwise.
Speaker 1:Yeah, and that's a great point. And I'll just end by saying I think one of the most frustrating parts of having any type of disability is that when you ask for help, it can turn oh, they need help. It turns into a thing. But people without disabilities get help and ask for help all the time and you help them and they help you. But yet when you have a disability, and sometimes it gets turned into like, oh, like I said, it goes back to that this is a special need and this is something different. So we really need to again get away from that and just understand that we're all connected and that disability is just a part of life. So thank you all for joining us. Thank you, caroline, for a great episode of the Atlantic City Atlantic Seal podcast. I didn't change the name, I promise. Thank you everybody. Goodbye, thank you, bye-bye, bye-bye.
