ANCOR Links: Season 1, Episode 6

André Floyd

Hello, I’m your host André Floyd here at ANCOR Links. And this episode is going to be fun, it is all about self-advocacy. And we have a great conversation coming up. But before that, I am joined by a colleague, Alli Strong-Martin. And I wanted to just talk with Alli a little bit about self-advocacy itself, but also self-advocacy in the realm of the rights of people with disabilities. So, to introduce to the concept, what it is why it’s so important, and some examples of it in the podcast space that we have both encountered. And then we have a great conversation with Emily, who is a self-advocate, has her own podcast, and we have a conversation with her coming up at the end of this discussion. So, we are super excited about this episode. Before we get started with all of that, I must start off by being a good host. Alli. How are you?

Alli Strong-Martin

Hi, André, I’m super excited to be here and to talk about this topic.

André Floyd

Yeah, I’m super excited as well. I think the space of self-advocacy has been so important for, you know, the field overall. But also, just like, from the starting point of voices mattering and being able to be heard. So I think we’ll start from the beginning. You know, self-advocacy is kind of what it sounds like, you know, being able to say what you want to have your voice heard about things that you’re advocating for on your own behalf, you know that it’s very simple. But when it comes to people with disabilities, it encompasses so many other meanings, because there are so many other instances in which their voices sometimes are not prioritized.

Alli Strong-Martin

Yeah, I think you’re super right about that. And for people with disabilities, specifically, I think, historically, and even still, in some cases today, they have been assumed that they don’t want to be involved in decision making, or, you know, that cliché, like have a seat at the table. When decisions are being made. people without disabilities, I think we, we often see that people without disabilities think that they might know what is best for a person with disabilities. And I think self-advocacy, as we’ve seen, really flips that narrative on its head about “No, I know what’s best for me,” putting the knowledge back, and the power back in the hands of people with disabilities themselves.

André Floyd

Yeah, and I think that’s super important to note, because there are so many different ways and so many different areas in which people with disabilities need to be heard. And, you know, we know that there’s always legislation, public policy, there’s of course, rights, there’s community inclusion, there’s so many different avenues in which decisions are being made, and people with disabilities need to be there. And that’s why self-advocacy, I think, is such an important tool to be able to utilize, and why it’s been fun to kind of do a little bit of research for this episode to kind of see what different, you know, through the podcast medium, what kind of self-advocates are out there, what kind of podcasts are out there to kind of help spread the word. So, we wanted to highlight just a few of those and kind of our takeaways from their discussions, because this really is an interesting medium to be able to have those conversations. I know that a lot of people are super podcast it out. And there are so many podcasts. And there’s been the mantra that, you know, the last thing the world needs is another podcast. But it all depends on your topic. I’ll agree. I mean, nothing against them. But I think the last thing the world needs is more like pop culture podcast, right? I think this can be a medium to actually hear and share other experiences and learn. And from that standpoint, I think there are so many podcasts that you may not be aware of, and maybe you are and maybe some that we might not even be aware of. But I think we wanted to spotlight just a couple because they are out there. And they’re super interesting and done by some very intelligent, very smart, very interesting people. So Alli, you went and listened to a couple. So give us give us one like share, share who you listen to who it was, what they do, and and what was the episode that you listened to and the takeaway.

Alli Strong-Martin

Sure, so I listened to Episode 55 of the Disability Visibility podcast on self advocacy and Alice Wong was able to talk to two people who identify as self advocates. They were Noor Pervez and Finn Gardiner. And Noor and Finn shared with Alice, just some really, really, I think important takeaways for me about what self advocacy meant to them and what self advocates really have to contend with on a daily basis to like under you were saying like to not understand about your rights, about what rights are not granted to you. And then kind of that, that effort that it really takes to be able to, to speak up and when something’s not right, or when you’re not getting what you need. And so Noor and Finn really talked about that, I think the burden, but also the strength that they’ve been able to find in solidarity with other self advocates and like the power of coming together, whether that’s on they talked a lot about online and social media, activism and community building. But one thing that stood out to me that Noor said, was that to them self advocacy on a daily basis, is what they said was really “the constant need to make space for yourself in a world that is just not built for you.” And I thought that was really powerful, and something that will stick with me for a long time after listening to that episode.

André Floyd

Yeah, I really love that. And it kind of echoes with an episode that I listened to it was the podcast is titled The self advocate. It’s run by Alison Klein. And the episode was self advocacy and social media. So it was great episode to listen to, I was like, hey, that’s the one I should listen to. But it was they had, they had a little conversation, where they mentioned the disability rights movement, and equating it to the openness and the pride of LGBTQ movements as well. And of course, for me, this also goes back to black pride movements, as well as just being open and loud. And that that normalization of it is important. And there was a line there that that was that kind of stuck with me as well, I’m sure other people may or may or may not have heard it, but it was it was quoted as it’s supposed to be disability pride, not disability hide. And that’s kind of the thing is that don’t make it quiet. You know, let’s talk about these things, not only because these are real things from real people that are happening, but it’s normal, it’s normalization. This is ways that like, society, and community can be built to make the every anything normal because people exist, and all types of people exist. And people intersections exist in everything from all of the things you could possibly really think of. But that’s why it was so important to have this perspective come out. And I think it’s really an I think it’s a very interesting and good point. Because being proud, especially on social media, you know, in podcast platforms, these mediums offer the ability to do this in a very impactful way. And for people who come across it, it may not know or don’t understand, or maybe they just are curious, or maybe they’re they’re scared themselves to like figure to think certain things or to know anything. And when you come across any sort of this content, it’s super eye opening. And I think just following that proud movement, you know, being proud of it’s putting it forward and forcing the conversation. That’s how so much of societal change happens. And this is why I thought it was a great episode, it was really good. And of course close to my heart because I’m, you know, I’m a big social media person. Clearly, I’m a big podcast person. But but just the combination of how all of that can be used to better community I thought was was really important.

Alli Strong-Martin

I love that so much. And just like speaking of being loud. Knowing that throughout history, you were talking about black pride movement, LGBTQ rights, advocacy, and just tying it to self advocacy for people with disabilities, that it’s been throughout history that it’s been the groups unfortunately, that have had their rights not upheld, who have had to come together to really make noise and demand those rights from people in power. We’ve always seen that groups in power, they rarely concede those rights freely when when not demanded. So I love that that those connections that are being made, so that’s really awesome.

André Floyd

Yeah, it was it was really eye opening as well. And I you know, it’s a thing that I’ve inherently kind of known because a lot of these you know, a lot of movements kind of follow one another because there are key things that are important and one of them is just awareness, just letting people know like hey, this is happening and it’s wrong. Or this is happening. This is what my life is like. And the only reason my life is different. Yours is because of this and we can remove that stigma, we can remove that, that lack of normalization, we can remove these barriers, we can move all of these things to give them to make life easier, or not even easier, just more like fair, you know, to, to everyone. So it’s just, it’s one of those things that I really, I really appreciate and love when I come across content like this in the disability space, because I really do think it’s the route to take.

Alli Strong-Martin

100%. And I think that you’re mentioning, it’s about awareness, it’s about being able to, I think you were saying, like, share your your individual story and how it is your individual story. But it also connects to to everyone else’s story in different ways. And one of the other podcasts that I was able to listen to, in doing the research for this episode was a podcast series that I really, really love. It’s produced by Art Spark Texas, and it’s called True Tales by Disability Advocates. And the episode I listened to was called The Gift of Not Paying Attention. And they have some really, really great episodes, they’ve got a really great playlist that’s online, we’ll link to it in the show notes. But this episode was about neurodivergence and ADHD, and different styles of learning and really interacting with the world. And one of the things that stuck out to me in the first part of this episode was that they said that, you know, they cited the statistic that, that according to the CDC, one in four Americans are disabled. And we’ve heard that statistic before, but then they went a step further. And they said, “that’s about 61 million adults with 61 million experiences and points of view about what it means to live in a world not designed for them.” And I think that stuck out to me. Noor had said something similarly, on Disability Visibility podcast about just this world, not being built with people with disabilities in mind or not being designed for people with disabilities, and then folks having to come together and advocate really for their rights, their access needs, support needs, to be able to access the community, like you said, just on a more fair basis that everyone else really takes for granted. So I really loved that about 61 million adults with 61 million different experiences and points of view, I thought that that was was super powerful. And I loved hearing that.

André Floyd

And again, it kind of goes back to what I said earlier, when, you know, the world doesn’t need more podcasts. But it certainly needs more podcasts from those 61 million. You know what I mean? So I think that’s, that’s the key there. Alright, the last one, before we introduce our conversation with the person that we selected to have an interview with. I have one more podcast to chat about, is the neurodiversity podcast. It is hosted by Emily Kircher-Morris, and is this episode is embracing the bright without quashing the quirky, which again, just the title alone, I was like this, this is it. And a quote in there that I thought was great is was “when I see bright and quirky neurodivergent people thriving, they carve out a good fit life for themselves.” And I think that’s super important. Because again, the normalization is the thing that matters. But until then, it’s about you know, finding good fits, it’s about making sure that you’re comfortable that you know when you find that fit and a lot of that can be the basis of self efficacy and where somebody’s most comfortable, what are the things that they’re interested in, you know, where can you find that like community for for them to give them that ability to, like we all want to do be comfortable, be our own selves, you know, explore who we are and what interests us and, and all of that and I just think that it’s great to, to, to cultivate the quirkiness, you know, I love that aspect of it. And to not talk about it as something that is negative, you know, is is a thing we all have these things I this podcast can go on for hours if I give you all my quirks. And and finding those people around you they just accept you is super important.

Alli Strong-Martin

I love that so much and also agree, that I could add on about two hours so this podcast, if we went into it with me.

André Floyd

We both disclosed that we are super quirky. So we’re extremely excited to talk to have a conversation that Tricia DePalatis, one of our coworkers, had with Emily from Expert Tips by ADEC Self-Advocates. Emily has her own podcast. She is a self advocate. And here’s what being a self-advocate means to Emily.

Emily

So advocating, or self advocacy in general. It’s like putting yourself out there, in my opinion, I feel like it’s like putting your voice out there. Like letting yourself be heard. It’s always scary putting yourself out there. Like following your dreams.

André Floyd

We loved talking to Emily, we loved getting her insights as well about why she does a podcast why it was something they wanted to get into, and what she’s trying to do with the podcast. So we’ve super encouraged you to of course, listen to that podcast and all the ones that we’ve mentioned. But specifically, stay tuned for Emily, because I just love this conversation. I think it’s great. And we just want to continue to kind of use this platform to elevate more voices of self-advocates as well because again, this is the podcast space is the place where this can happen. And hopefully, if you haven’t heard from self advocates before, we’ve given you a few options to be able to hear from them. But also after the break. We will have Emily from Expert Tips by ADEC Self-Advocates in a conversation with Tricia DePalatis.

Tricia DePalatis

Hello, my name is Tricia DePalatis, I’m a membership assistant at ANCOR. I’m super excited to be here today with Emily and Stephanie from ADEC. I am especially excited because I love Emily’s podcast, it is called Expert Tips by ADEC Self-Advocates. So we’re really thrilled that they’re here with us. I’d love it if both of you could begin by telling us a little bit about a deck and what you do there. Can we start with Emily?

Emily

Yeah, sure. I am a client of ADEC, I participate with the programs. I’m also the president of our advocacy groups. And what else do I do? I’m also the host of the podcast, as you said as well.

Tricia DePalatis

You do an amazing job hosting it. So thank you so much for being here. Stephanie, what about you?

Stephanie

I’ve worked at ADEC for two years. When I moved back to Indiana, ADEC was the location that I had my eyes set on, because of the various awesome work that we do in our community. So my role at ADEC. I am the residential benefits coordinator. So, anyone that we serve as Social Security representative payee, which is roughly about 150 people, I manage their social security benefits, as well as their health coverage through Medicaid. My other role here at ADEC is serving as the self-advocates of ADEC liaison. So, working with our different self-advocates to work on our mission, which is to advocate abilities over disabilities. And we do that through igniting our inner independence through education, communication and community outreach in Elkhart and St. Joseph County.

Tricia DePalatis

Amazing, gosh, you really do a ton for ADEC. Especially I cannot my head just swims when I think about managing Social Security and Medicaid benefits. And I’m really happy that you also get to do some work with self-advocates. Because yeah, those are two completely different skills. And I’m just super impressed by everything. Thank you.

Stephanie

Yeah, it can be a lot to manage at times. But at the end of the day, it’s to benefit our clients, and we want them to have as much choice and possibility so they can live lives to their fullest.

Tricia DePalatis

Absolutely. Perfect. Well, let’s go ahead and jump into some discussion around self-advocacy. So, Emily, for anyone listening who may be unaware, can you define what a self-advocate is?

Emily

The great thing about self-advocacy is that sometimes there’s not a concrete definition. It’s really all about baby steps. We’re all learning as we go. And personally, for me, I think it’s like speaking up for ourselves.

Tricia DePalatis

Oh, absolutely. I really do encourage everybody to listen to the podcasts because that’s what you do every month. What do you see, Emily, as the self-advocate’s role in affecting change?

Emily

Well, it really depends on which change that you want to start creating. A lot of the times, if you want to make a certain scene change, we got to like, talk about it at first. Like, if we don’t ever say what we want to change, it won’t change. Right? Did you agree? Stephanie?

Stephanie

Yeah, thanks, Emily. So, you know, there’s, there’s different things. So like, when I think about affecting change, so like, I, my mind immediately goes to like the VR as in vocational rehabilitation and getting people employed. Emily is like a great proponent of being in in the community and having employment. And, you know, you think back however many years ago, and that may not have been a focus of getting folks with disabilities out there in their community and having gainful employment. And those services, you know, getting them out there. And being able to do that wouldn’t be possible without the right funding and support to make that happen. The Division of Vocational Rehabilitation, DVR, VR, whatever acronym you use, for that service provides the funding. So, people such as Emily can have a job coach, and can have support along the way in finding employment, as well as continuing on long term with support if needed.

Tricia DePalatis

Emily, as you mentioned, you’re the president of the ADEC self-advocates group, can you share more about this community and all of the work that you do, like what sorts of activities do the members engage in?

Emily

Well, so far, we visited the enchanted gardens, there’s like a pumpkin bowling over there, there also has been like a basketball, that’s a really big thing for like, for ADEC, we have like a basketball team. We did like a lot of fun events, we were hosting our parties. And sometimes we also would get back in the community, like, what are some places that we would donate?

Stephanie

Yeah, so this this year, a big focus for our self-advocate group is to get out and do community outreach through volunteering. So as events come up, we get groups together that will go out and work to have a chance to just get to know their peers in their communities. Emily talked about basketball. That’s another really big thing, right? I mean, we get a lot of hype from that.

Emily

Yeah, we have a lot of people who get really into that here.

Stephanie

The future goal is to make more connections with our community so they can see us and we can see them.

Tricia DePalatis

Yeah, it sounds like you are all making sure that you’re getting out there having a lot of fun in your community, making sure that people know who you are. And I think that’s amazing. I wish that I could join in on some of these community activities. It sounds like a blast. What are some ways that self advocates have been able to advocate within your community and state?

Emily

We’ve been to the State House, we got to thank our state leaders about the freedoms and rights that they’ve helped us gain over the years. I mean, I don’t know where we be. Now, if they weren’t there. All the way back then.

Tricia DePalatis

It’s true. There have been so many changes when you look back in the last 100 years or so and how people with disabilities have been treated in this country. And we have a huge amount of gratitude for the heroes who fought for everybody’s rights. You’re right.

Stephanie

So one of our largest events that we’ve done since we got the group back together since COVID. We partnered with our local group about voting, so we had self-advocates of Indiana came to ADEC and they shared about how to vote, why we vote why it’s important. And we also had the clerk’s office bring in voting machines so that we could practice voting, and I think we had 80 people show up for that event. And out of that group, I think there was only two people who had ever voted before and so majority of them had never even seen a voting machine. Now whether or not they choose to vote when that time comes, obviously, that’s their choice. But we wanted to provide the education for them to understand that A) they have the right to vote. And B) this is how you do it. So you know, it wasn’t us leading them in any direction, but offering education for them. We also had several guardians come to that event, which I thought was really neat, because it is a partnership of them supporting that person, if they want to vote. But we were really happy with the turnout of that event. And hopefully in the future, we see more of our folks voting, if that’s something that they do their research, and they want to make that decision to do so.

Tricia DePalatis

Yeah, that’s incredible, so important that people are aware of their rights, especially guardians, as you said, and to allow people the dignity to vote just like anybody else in this country has that right. So I’m really happy to hear all of the work that ADEC is doing, and all the self-advocates are doing in your community, both the fun things, and also things like going to the statehouse and making sure people are familiar with the voting machines, and all of the accommodations that they are allowed to ask for. So that’s fantastic. Emily, what advice do you have for people with disabilities who would like to get more involved in self-advocacy?

Emily

I wish I had someone that told me along the lines of like that, whether or not if you have a disability, you still have an ability, that’s along the lines of like, being proud of who you are. And being confident with who you are, how you carry yourself. A lot of the time like that being a self-advocate, it does take a lot of confidence. It’s very loosely defined, it has a lot of reasons to be self-advocate. Now, a lot of the times it differs from person to person. But if I were to give any advice to anyone about who wants to be more involved in self-advocacy, it’s all about baby steps. Even, I heard this from a shoe commercial, it’s like, even a misstep is still a step forward.

Tricia DePalatis

Definitely. And I love what you said about how everybody went to disability still has abilities. And it’s so important that we celebrate who you are, what everybody brings to this world, instead of looking into, oh, no, there’s a disability. There’s something wrong. No, we’re all humans, we all have something that we can give. So yeah, I think you answered that beautifully. And it sounds like it’s just important for people to have that confidence in who they are and feel comfortable advocating for their rights and their dignity. And I just appreciate all that you’re doing to model that. So thank you.

Emily

Thank you. That really means a lot to me.

Tricia DePalatis

Stephanie, how can provider agencies and direct support professionals help support goals of self-advocacy?

Stephanie

So, people-first language is it’s like instead of “wheelchair-bound person,” you would say, Johnny, who uses a wheelchair. We have so many meetings, actually, I just attended a quarterly meeting for Emily. And when we have those meetings, it’s the person’s meeting. Right? It’s EMILY’S meeting. So, opening that meeting, by giving Emily the floor to say, these are the things that I that I want to talk about today. Even though we know that there’s some other things that we probably need to talk about, like budget and goals, and that, you know, things like that, and, but having them start the conversation of that meeting and leading us through, you know, through that, that can that can take a lot of practice. And not every person is great at that, including the staff. Right?

Emily

I’m still working on it.

Stephanie

We’re all still working on it. So having that person lead their meeting, because it’s about them, I think really is like an anchor to providing the advocacy in their daily life.

Emily

I can’t imagine if someone is experiencing that kind of thing when you are talking. And they just pretend you’re not there.

Stephanie

Unfortunately, it happens a lot more than you think. You know, Tricia one, one other thing that I would like to add, and I see this show up in like when people run like DSPs run medical appointments or in community employment, a huge step that agencies can take is letting the person be in front. It’s such a small social cue, like I don’t know if you can see it right now, but I’ve got Emily sitting in front of me, like I’m kind of back behind her because, like with an employer, I find a lot of times that they want to talk to the staff and not their employee. Luckily, Emily has a great employer, you don’t really run into that issue. But I find that pretty often where they want to talk to the staff directly, and that person is just hanging out by the side. And so, a really subtle cue that you can do is take a step back that way the focus is on the client, or the employee who’s working at that location. Same thing with medical appointments, going to the store, you know, things like that. And also allowing them space to answer I think we live in such a quick, quick and fast paced world that we want answers really quick, and giving somebody the space and time to answer that question and get their message out.

Emily

I remember struggling with that when I was younger, like because as Stephanie says, it’s a quick-paced world. And unfortunately, whether you felt like the disability or not, they’re either ostracized, pushed to the side, or like, I don’t know, like a lot of the time. That’s how everybody experiences. But I remember like having problems like coming out of my shell when I was younger, even though I was mostly had an outgoing, bubbly personality, I may have that. But also, I did have a hard time speaking even in my own family, because it was just a quick conversation. And a lot of the time I just need time to process everything that was just said.

Tricia DePalatis

Definitely. Thank you so much. I’m just so happy to have you both here. And I only have a couple more questions for you. Emily, your podcast Expert Tips by ADEC Self-Advocates recently celebrated its one year anniversary. Congratulations.

Emily

Thank you.

Tricia DePalatis

Of course! What are some benefits of having publications that are produced by self-advocates?

Emily

A lot of the benefits is like, yeah, it’s nice to be able to speak freely about things that I like to talk about. But also like, sometimes I’ve got to remember the big picture. And that’s really the self-advocacy piece. And we went from like, people don’t really talk about self-advocacy to like, now a self-advocacy podcast is trending.

Tricia DePalatis

Yeah, it’s kind of exciting. I think that there are more and more podcasts starting. But I agree. When I started, I used to work at a provider agency. And before I started that job, I worked as a case manager. But before I started that job, I tried to find something like I love podcasts, and I wanted something that would help me have a better sense of the issues and what it’s like to work with people with disabilities and just what’s going on. And I had a very hard time finding something. So that’s why when I realized you all had a podcast, I was so thrilled that that was out there. And it’s really important. So I’m glad that you’re helping correct that. And I have one last question. Emily, where can listeners find your podcast? And do you have a certain episode that you would recommend for anybody starting to listen?

Emily

Well, I recommend the one with Jonny. Yeah. And where you could find it. It’s on Spotify. YouTube, I could get on Apple too. I think there’s more right?

Stephanie

I know Spotify and YouTube are where we get the most linkups for people to find them. So yeah. My favorite episode is where we worked with Yuri who is Emily’s employment consultant, job coach, job developer. They wear so many different titles, so many different hats. And then we also had on your vocational rehabilitation counselor, Chris. So, they were having a conversation about employment and how you can receive those services. And that was my favorite.

Emily

Yeah, I like that one. I actually cried on that episode.

Tricia DePalatis

I think that you bring a very personal element to this hosting and I think your involvement, that’s what makes it so special. So I really do. Thank you for sharing your voice.

Emily

Thank you. I appreciate that.

Tricia DePalatis

Well, it’s been wonderful chatting with you today and we look forward to learning more from you, Emily and I encourage everybody listening to go ahead and check out their podcast. Thank you.

Emily and Stephanie

Thank you.