Disabled Lives Matter
S2-Ep16_Dona_Harris

S2-Ep16_Dona_Harris

June 20, 2022

Season 02, Episode 16
Co-Hosts: Nadine Vogel & Norma Stanley
Guest: Dona Harris

Intro: [Music playing in background] Disabled Lives Matter... here we go!

Voiceover: Hello and welcome to this week's episode of the disabled lives matter podcast. Let's welcome co-hosts Nadine Vogel and Norma Stanley.

Nadine Vogel: Hello everyone, this is nadine vogel one of your host of disabled lives matter we are a podcast but actually we are more than a podcast we are a movement and, as always, I am joined by my fabulous co host norma stanley hey norma.

Norma: How are you.

Nadine Vogel: Good norma I know you and I have been waiting for this interview to talk with Dona Harris.

Nadine Vogel: Dona Harris has done a lot of things, but, most recently, she has founded a business and she's the CEO and executive director.

Nadine Vogel: of an organization called.

Nadine Vogel: Great day Family Connections hi Donna, how are you.

Dona Harris: i'm great nadine, how are you.

Nadine Vogel: I am good i'm even better because we're talking now today so, can you tell us a little bit about Great Day Family Connections.

Dona Harris: Well, I call it Great Day Family Connections, a family enrichment program and it took me a long time to even get to that.

Dona Harris: But basically it's because as families, I think we've lost the ability to communicate and we're taking we have taken the ability for parents to be those first teachers out of their hands and as well as stop them from.

Dona Harris: what's the word i'm looking for for taking leadership, you know there's so much history that that parents aren't sharing with the children anymore.

Dona Harris: And values and morals and how to communicate, you know how to take care of their own personal finances and things like that that we've left up to the school systems and we left up to community at large.

Dona Harris: And I call it, this bring it back to the household you know that time and I will sit around my grandmother's kitchen table with my mother and my cousins and we'd have these family discussions that you just don't see or hear about anymore.

Nadine Vogel: Right right well you know it's interesting that you say that because norma and I both are special needs moms.

Nadine Vogel: And you know we've had conversations that you know, especially when our girls were younger they're adults now, but when they were younger.

Nadine Vogel: How we would you know, in the school systems or to the doctors say we are the experts on our children right ready listen to us, so I really excited to hear about the organization so.

Nadine Vogel: You know, tell me a little bit more tell listeners a little bit more about what was behind it, what obviously this didn't just happen overnight you woke up one morning and said wow this is needed.

Nadine Vogel: Was that what was that genesis to get there .

Dona Harris: Oh it's an interesting journey.

Dona Harris: So I always remember my family time and, two, three things in my family and my life that I keep.

Dona Harris: is one that my mother used to get on the floor and play Jacks with us, I have a sister.

Dona Harris: And my mother told us how to play Jacks so I always remember sitting on the floor to playing jacks and my father taught us how to ride a bike and how to play cards and so playing cards, we were supposed to be learning numbers because we played poker we played.

[Laughter]

Dona Harris: Um you know you name it, there was a card game that we played it so we also played um and then I remember one time it was raining and every Memorial Day, we would go out to flushing meadow park i'm from New York so we'd go out to flushing meadow park.

Nadine Vogel: Me too and I used to go to flushing meadow park.

Dona Harris: All right and you're how you would ride the surrey bikes right.

Nadine Vogel: Yep, yep.

Dona Harris: And so. And we would always get the.

Dona Harris: surrey and my parents and it was just such a great time and my cousins would come well one particular time, it was pouring.

Dona Harris: And, of course, you know as a kid you're.

Dona Harris: disappointed. so my mother took a blanket and put it out on the living room floor and we had a picnic and she turned the shower on and put us in a bathing suit.

Dona Harris: And would run back and forth, you know, like we were in a sprinkler.

Dona Harris: And I just remember that and I just remember how much fun that was so over the years when I you know went to school and graduated and you know blah blah and.

Dona Harris: I remember, working with women who were substance abusers and I was working at grady memorial hospital here in Georgia and that's when it was called grady memorial hospital.

Dona Harris: But I had to work with women who were pregnant substance abusers and I worked with them postpartum so after they had their baby.

Dona Harris: And I worked out of the neonatal unit because i'm a social worker so i've worked out of the neonatal unit, and I did parenting programs.

Dona Harris: And now, in New York, I used to work with foster care and adoption, so the irony right, so here.

Dona Harris: I was in foster care and adoption, when I was in New York and i'm training foster parents and everybody, and now I moved to Georgia.

Dona Harris: And i'm working with women who have substance abusers and those are usually the ones that you're taking the babies from. right.

Dona Harris: But the goal was for them to get well enough that their babies can go home.

Nadine Vogel: right.

Dona Harris: And so that was a whole different mindset and then I realized I did a one of my trainings was on playing and I asked them I said, what are the things that you like to play when you were growing up, and they didn't.

Norma: They didn't have any memories.

Dona Harris: If you didn't know how if you don't know how to play how you're going to teach your children how to play.

Dona Harris: Right, and so we set a date and the next time I went and we played and we taught them how to jump double Dutch we play Jacks I bought in bat and balls I bought in all of my favorite things that I like to do when I was a kid.

Dona Harris: and as an adult but I did all of those things that when I realized that you have adults who don't know how to play.

Dona Harris: Then you have children who don't know how to play and I think what happens is that so many people think oh you just go out and play, but there's so many social skills involved in that.

Dona Harris: You know you learn turn taking you learn patience you learn teamwork, you know there's so many things involved in that kids miss and so fast forward I ended up working at the school for the Deaf the Atlanta area school for the Deaf.

Dona Harris: Loved where I love parents I love working with parents, because if you can change the way a parent perceives.

Dona Harris: Their household that's going to help that child, so I never really sat down and counsel with the kids because i'm like well about to put them back in the same environment what difference does it make.

Norma: Right.

Nadine Vogel: Right right.

Dona Harris: So I worked with the parents and realizing that over 90% of them don't communicate with their children or don't know how to communicate with their children or communicate with their children minimally.

Dona Harris: And because they haven't learned sign language or you know, some of them have would they would do home signs.

Dona Harris: Which is fine if that's your mode of communication, but how do you sit down and talk with your deaf child the same way, you talk with your hearing child and so now.

Nadine Vogel: Right.

Dona Harris:  you have to ask yourself. who's teaching.

Dona Harris: Your def child, you know your values and your morals and I would have parents called me up and say you know someone's on my family died, can you talk to them about death.

Nadine Vogel: Wow.

Dona Harris: Well my idea of death may be different from your idea death, you know or my idea of um when they should start dating may be different from your idea and so helping them have those conversations and I have a very dear friend.

Dona Harris: and her name is Kinga and she has organization called great day and we've been friends forever and she is a counselor.

Dona Harris: And we're used to always talk about how i'm like you do this Counseling, but you really need to have a family component and we talked about it for years, and so she says to me well, you need to open it up and i'm like you know what I am I am I am you know you put it off put it off.

Dona Harris: So she went for my business license and she named my program and so that's how it became great day family connections and.

Norma: You combined your your expertise and your passions.

Dona Harris: Right.

Norma: Nice.

Nadine Vogel: yeah that's that's great I mean the whole the whole concept of language, accessibility and communication, I mean you're right, you know when you have someone else communicate on your behalf, how do you know what they're conveying.

Dona Harris: Right.

Nadine Vogel: And how do you know that it's it's what your bel. like you said, your belief system your spirituality your everything.

Dona Harris: Right.

Nadine Vogel: I mean norma I don't know about you, but I can't imagine someone doing that, with my child.

Norma: Right. exactly.

Norma: And you know just observing.

Norma: You know, sometimes when their children around other people you know, there may be things that you say that they've conveyed that wouldn't necessarily be something that you would do it, you wouldn't do it that way.

Norma: No, no, I think it's important to for the kids understand where the hearing impaired or not.

Norma: How they can communicate with their parents and get what they need to get.

Dona Harris: Right.

Norma: Even if even if they're non verbals.

Dona Harris: Right, and I think one of the problems that happened with parents is they don't have that opportunity to grieve.

Nadine Vogel: Right right.

Dona Harris: um and that's another thing that I address in my program is having that opportunity to grieve to know that no your child is different, but different, is not, different is not bad because we're all different.

Dona Harris: Right.

Norma: yes.

Dona Harris: We all and and I tend to not use the word disability.

Dona Harris: That much because you know, as I say, we're all disabled in something.

Dona Harris: You know.

Nadine Vogel: right, right.

Dona Harris: so whereas you may say, well you're hearing and you can talk, but I can't sign, I can but i'm just saying you know you know.

Dona Harris: and that's a skill that's a learned skill and so to look at what the child brings to the table and I don't just focus on deaf children because they have siblings and I think is too often that we and i'm gonna use the words segregate.

Nadine Vogel: Our families.

Dona Harris: You know, deaf child goes here in child goes here, and you know.

Dona Harris: But no, this is about coming together and learning together and learning your history learning about literacy, whether it's books or financial literacy learning.

Dona Harris: about your health and health history things that we don't we no longer have conversations about so that's what the program and this program is called legacy and that's what is, you know that we do building our legacies and see where are legacies are going to go.

Nadine Vogel: Well you know what's interesting Dona is my older daughter when she was a baby she was unable to communicate verbally.

Nadine Vogel: And she's not deaf and doesn't have hearing loss, but as a result of her disability had trouble with that.

Nadine Vogel: And so they taught her signs basic signs that she could do, and they taught us, the signs because we couldn't communicate she was you could see how frustrated she was getting.

Dona Harris: right.

Nadine Vogel: But then what happened was she was learning the signs quicker than we were.

Dona Harris: yes, yes.

Nadine Vogel: Then we had frustration all over again, because now she was communicating but in a way we couldn't completely always understand.

Nadine Vogel: So it's an interesting balance that you know you talk about in terms of really working with the parents, I think that that's that's so important, and you actually have a program I believe called hands up.

Dona Harris: Yes, yes So yes, I do see sign language classes and I have various levels of sign language classes and, recently, someone had asked me about doing one, for children so i'm thinking about doing like a summer camp.

Nadine Vogel: wow.

Dona Harris: And I think it's important, especially when you have siblings that the siblings learn how to how to communicate.

Nadine Vogel: yes, yes absolutely.

Dona Harris: Well, I don't want siblings to become the interpreter for the child I don't think that's appropriate.

Dona Harris: But I do definitely want parents to learn how to communicate and I want people in the Community, because the more people that communicate.

Dona Harris: Even if you just learn basic it open so much door so many more doorways for that child, you know, to know that hey I have a sensibility and it's okay.

Dona Harris: You know that people still want me to be engaged because there's so many really great programs out there, that are not available to children who are deaf or hard of hearing.

Norma:  Yes.

Nadine Vogel: You know what's interesting, intersting that you bring that up but norma I know you have some questions.

Nadine Vogel: We have to run quickly to commercial break as soon as we come back why don't norma I'll turn it back over to you and you just bring us back and start with some questions so Dona hang on to our listeners, we will be right back with Dona Harris stay tuned.

Voiceover:  And now it's time for a commercial break.

[COMMERCIAL]
Are you familiar with Springboard Consulting.  If you are, you are certainly aware of our annual Disability Matters Awards. This year, 2022, we will live-stream our Europe awards on July 26 & 27, that event is being hosted by Barilla.  And later this year, our Asia-Pacific awards are being live-streamed on November 9 & 10, and that event is being sponsored by Manulife.  Don't miss out! For more information visit www.consultspringboard.com.

Voiceover:  And now back to our show.

Nadine Vogel: Hello everyone, this is nadine vogel and joined by my co host norma stanley and we are interviewing Dona Harris today and talking about her amazing organization, the great day family connections norma i'm going to turn it over to you.

Norma: Well, I just had a couple of questions because i'm and I think because of.

Norma: Dona at an event that we were together that she kind of enlightened me and there was a there was a couple of things that I wanted to share about that.

Norma: there's a difference between American sign language and typical sign language, could you explain it and then the question is, you know, have you had an opportunity to interact with the Sign1News organization and it's something that you might.

Norma: be interested in because they actually communicate the news via for deaf deaf and hard of hearing people and they have the interpreters as well as the signers and all of that and it's connected to CNN and that's something that you've ever looked into.

Dona Harris: Okay, so I may answer your first question. Okay.

Dona Harris: So so American sign language is different from what I teach okay so it's basically an asl it has its own format and its own syntax.

Dona Harris: I teach what what.

Dona Harris: It has various names, but one of them is pigeon okay so basically or Conceptually Accurate Signed English is more typical and I do that because I feel it's easier for families to learn.

Norma: um hmm.

Nadine Vogel: Right.

Dona Harris: than to learn asl. so you can't talk and sign if you're doing an asl and it's very difficult to write you really it's not a written language, it is a signed language.

Dona Harris: I teach C-A-S-E because.

Dona Harris: I can talk and sign at the same time, eventhough you shouldn't but it gives it helps children to learn sentence structure.

Dona Harris: And I think that's important that they learn how to write well.

Dona Harris: And how to put things in a format, but it's called Conceptually. Accurate Signed English because.

Dona Harris: If I was going to sign my nose is running, it will be different, the way I was signed it in asl vs I was signing because such in in what they will call S-E-E. Signing Exact English because in Signing Exactt English to sign for run is like a person running and our nose runs more like a faucet.

[Laughter.]

Dona Harris: Right.  Well at least conceptually more than it does as a person running and so.

Dona Harris: that's why I say I teach Conceptually Accuracy Signed English because I want families to feel more comfortable instead of saying okay now did I put this in the right order is this, you know just think about whether or not they can visualize what you're saying.

Norma. Right.

Dona Harris: That's a lot easier and so that's what I teach.

Dona Harris: I do not proclaim that I teach asl because I don't okay.

Dona Harris: To answer your other question.

Dona Harris: I know of Sign1News, and when I was working at the school, I had the you know the opportunity to meet them when they were just beginning.

Dona Harris: I have not had an opportunity to speak with them, or have any type of interchange with them, but I definitely promote it and I definitely encourage it, you know because I think it's wonderful that there is that service that's out there, you know and for anybody who's interested in i'm sorry.

Nadine Vogel: No. Go ahead.

Dona Harris: No, I was just gonna say, and I think it's great because it not only did they give you information on what's going on in the deaf Community whatever, but for the Deaf Community to be able to know what's going on in the Community in their own language.

Dona Harris: You know.

Nadine Vogel: And I, and I want to take that a step.

Nadine Vogel: Further, though, going back to what you said earlier Dona it's not even it's even bigger than that it's then those siblings.

Nadine Vogel: and family members.

Nadine Vogel: Right, who now can watch the news and engage participate with their siblings who are deaf or hard of hearing or have hearing loss.

Nadine Vogel: and actually do so in a very inclusive way, I also think that by doing that and doing what you're doing it, it does educate it educates the general public about inclusive.

Nadine Vogel: And, and we need more of that we need so much more of that in so many ways.

Nadine Vogel: Because what i've learned and norma, I think you and I have talked about this is that you know when the child is excluded when they're in school and they're excluded from activities and other things, the parents tend to be excluded as well.

Dona Harris: that's true.

Norma: yes. and we don't like that.

Nadine Vogel: No, no, no, no, not at all and so.

Nadine Vogel: What you're doing is is bringing people together in a way that goes beyond language right it goes it goes beyond it's really more about inclusive engagement and community, and I think that's really what you're trying to get out if I if i'm hearing correctly.

Dona Harris: No you're absolutely right and and you know you you touched on, because you said you're excluding the Community, but you exclude it in your own family.

Dona Harris: You know.

Nadine Vogel: Yes yes.

Dona Harris: You have a child who has a different ability, the family excludes you because they're like.

Dona Harris: Okay, what do I do and I don't know if I could take them with me or they may not take the other sibling or if the child is deaf, then you have one parent usually who learns how to sign, and so much the other parent.

Dona Harris: But what is that teaching that child, you know how do they evaluate how they feel valued, you know.

Nadine Vogel: right or not.

Dona Harris: Right and I have seen so many young children as they grow up because the school started at age three and it can stay until age 22 and i've had conversations once they hit teenagers, tells you how long I've worked there,  teenagers and they didn't want to be engaged with the family anymore.

Norma: Wow.

Dona Harris: And then the family was upset but what pattern, did you set and not to say that you're not loving, not to say that you're not providing for them, or anything like that, but there is a picture in the deaf community that they'll use a lot and it's called Deaf Pet.

Dona Harris: So it's like a picture of a child sitting on the floor looking at these adults.

Dona Harris: Having these conversations back and forth, you know, and I was saying, and not be trying to be disrespectful in any way, but if I call my cat my cat will come. and if I tell my cat to stop doing something they'll stop doing something, but can I sit down, have a meaningful conversation.

Norma: Right.

Dona Harris: You know and that's what you want, you want to be able to have meaningful conversations with your children, no matter what their ability is you know you want to be able to do that.

Dona Harris: And deafness is the one disability that you technically have to learn another language.

Dona Harris: Now of course science has bought about cochlear implants and things like that, then you know give abilities and then you have some.

Dona Harris: parents who teach the children to be oral which is cool I don't say you have to use to have to do, that the only thing I have, I say you have to have a relationship with your child.

Dona Harris: You know you have to form that bond that they feel that they're valued and loved and treasured that they're just as important as anybody else in the household.

Nadine Vogel: Right and Dona i'm just gonna go back here, and you said about meaningful conversation with your cat if you figured that one out we can have a whole other interview.

[Laughter.]

Nadine Vogel: I just wanted to put that out there okay.

Dona Harris: But you think about it. I mean I don't know how old is your daughter is.

Dona Harris: But I think I look back at my life with my parents, we had meaningful conversations until I became an adult.

Dona Harris: But until I moved out I didn't realize.

Dona Harris: That all the things that my parents did for me wasn't the norm right, you know it wasn't the norm, and so, then I can remember calling my mother up when I was working at grady and saying oh I just need to let you know how much I really value all the things you and dad did for us.

Nadine Vogel: Right.

Dona Harris: You know, because when you hear the stories of other people.

Norma: Oh for sure.

Dona Harris: You know, and the things that they goes through, you know, I would have used drugs to you know.

Nadine Vogel: Right.

[Laughter.]

Dona Harris: But you don't get that appreciation until after you've removed yourself and gone through some other you know life experience.

Nadine Vogel: Right right. no absolutely and you know and another thing you said too I want to come back to about you know, sign language truly being another language.

Nadine Vogel: It frustrates the dickens out of me and norma you and I have talked about this you know grades you know K-12 when it when they're offering Spanish and Italian and German as a another language or even in many universities, why aren't they offering sign language.

Dona Harris: Well now, they are.

Dona Harris: Now they are so now.

Nadine Vogel: Is it standard.

Dona Harris: Yes, yes, yes, now.

Dona Harris: Now.

Dona Harris: I won't say that all the schools offer it i'm not going to say that.

Dona Harris: But it is viewed as a second as a foreign language.

Nadine Vogel:  Good.

Norma: Wow.

Dona Harris: Georgia state offers it I think Valdosta offers it and it may be, you know some other schools but yeah, it is viewed as a second language, yes.

Nadine Vogel: Well, it is about time.

Norma.  It is.

Nadine Vogel: It is really about time well, this has been wonderful i'm.

Nadine Vogel: You know it's it's interesting to me when I hear what you know the things that your organization does, let me ask you this, how do families know about you how did they come to learn about you, how can we have the help other families know about you talk just a little bit about that.

Dona Harris: Okay, so it's like I said, this has been a journey.

[Laughter.]

Nadine Vogel: It always is.

Dona Harris: So yeah so my organization, I have finally found my place, so to speak.

Dona Harris: Okay, and so the legacy program will start in June.

Dona Harris: And we're going to start off.

Dona Harris: Basically, with talks just lunchtime talks that I called home talk and it's called Engage N Eat, and so we will start that on in June, and I think I have it for Thursday afternoon in June, because, like, I am a care provider, and so I had.

Dona Harris: A work around scheduling and things like that, so that i'm not impacting you know my father in any kind of way.

Dona Harris: right and then.

Dona Harris: The legacy program i'm hoping that will start that in the fall and that will be a 10 week program with activities.

Dona Harris: Based program so basically i've been doing word of mouth i've had you know i've worked with a lot of people and so i've done word of mouth and friends and things like that, as my program builds and then I have an event that i've done this would be my fourth year doing it's called Silent Town.

Dona Harris: And I used to have it in March and I moved it to November, because November is national communication month.

Dona Harris: And people would think and I send it up just like have you a Community so even when we did it on zoom for the first year due to Covid. we set it up as a Community, and so you have stores, we have restaurants, we had a post office everything you can find in a community, the key to it is you can't talk.

Dona Harris: So it didn't matter if you knew sign language, because you couldn't sign because supposedly no one else should know sign language so basically is to figure out how do you communicate to somebody else, how do you get to know. Other people.

Nadine Vogel: Nice.

Dona Harris: How do you find out know what their services are and people had a blast the biggest thing was getting vendors because i'm like well how am I going to talk, I can talk well you know.

Nadine Vogel: yeah.

Dona Harris: You know you're going to write. you'll put it in the chat when we had to go to zoom but that's that's my biggest event is Silent Town.

Nadine Vogel: So Dona just tell us, is there a website, or some way to get in touch with you.

Dona Harris: My website is greatdayfamilyconnections.org or you can feel free to email me at dona.greatdayconnections@gmail.com.

Dona Harris: um like I said we're we're changing some things we changing some of our logos were changing some of the activities we had on the website So I had to condense what I was doing too much.

Dona Harris: um what does a a mater of everything no how's that go.

Nadine Vogel: Oh yeah.

Dona Harris: master of none.

Nadine Vogel: yeah exactly yeah.

Dona Harris: I can remember how exactly it goes, but yeah. 

Dona Harris: You can be all over the place, but not doing any one thing well.

Dona Harris: And I decided it is important for me to do less and do it.

Dona Harris: Well, so that what we're going to do.

Nadine Vogel: Well, it sounds like you're doing a lot a lot and doing it all well, so thank you so much for. all you do.

Dona Harris.  Thanks so much for this opportunity.

Nadine Vogel: And your organization, unfortunately, we are out of time, so I just wanted to have our listeners know that again this was Dona Harris and Great Day Family Connections, we look forward to talking with you again soon and norma once again another. great show.  another great show.

Norma: Yes, it was.

Nadine Vogel:  So for our listeners, we will see you on another episode of disabled lives matter see you soon.

Dona Harris:  Thank you.

Norma: Be blessed everybody.

Nadine Vogel: bye bye everybody.

Closing comment:  [Music playing in background.] Thank you for listening to this week's episode of disabled lives matter. We look forward to seeing you next Thursday.  Have a great week!

Disclaimer: The views, information, or opinions expressed during the Disabled Lives Matter podcast series are solely those of the individuals involved and do not necessarily represent those of Springboard Global Enterprises, Springboard Productions, and its employees, contractors, subsidiaries, and affiliates.  The developers of the Disabled Lives Matter podcast are not responsible and do not verify for accuracy any of the information contained in the podcast series available for listening on the Podbean hosting site and/or any other associated hosting entity. The Primary purpose of this series is to educate and inform, and does not constitute disability, medical and/or other professional advice, and/or service(s). This podcast is available for private, non-commercial use only. Advertising incorporated into, in association with, or targeted toward the content of this podcast, without the express approval and knowledge of the Disabled Lives Matter's site developers is forbidden. You may not edit, modify, or redistribute this podcast.  The developers of the Disabled Lives Matter site assume no liability for any activities in connection with this podcast or for use of this podcast in connection with any other Website, Computer, and/or listening device.

 

 

S2-Ep15_Isaac_Zablocki

S2-Ep15_Isaac_Zablocki

June 9, 2022

Season 02, Episode 15
Co-Hosts: Nadine Vogel & Norma Stanley
Guest: Isaac Zablocki

Intro: [Music playing in background] Disabled Lives Matter... here we go!

Voiceover: Hello and welcome to this week's episode of the disabled lives matter podcast. Let's welcome co-hosts Nadine Vogel and Norma Stanley.

Nadine Vogel: Hello everyone, this is nadine vogel coming to you from disabled lives matters, this is more than just a podcast, this is a movement, and I am joined by the fabulous norma Stanley my co host a normal.

Norma: Hi, hey everybody.

Nadine Vogel: I am really excited today norma because we're going to be interviewing Isaac Zablocki.

Norma: Yes.

Nadine Vogel: Isaac is the director of the Israel film Center at JCC in Manhattan and there's just so much here to talk about so Isaac welcome to the show.

Isaac Zablocki: Thank you so much, thanks for having me.

Nadine Vogel: Yeah absolutely, so I know that you went to film school, this is, you know your passion your avocation your profession to tell us a little bit about let's start with the work that you do at the Israel film Center.

Isaac Zablocki: Well, I think all of my work really connects ah, I believe that film is a tool for is a form of education and a tool for change, I think.

Isaac Zablocki: When people watch films any kind of movie I mean even truthfully like mainstream movies too Hollywood blockbusters they change you as a person and that's what good art does and.

Isaac Zablocki: And that's a very powerful and a very important tool to have, I think, film in general is is really one of the far reaching and sometimes easily accessible for some in some ways.

Isaac Zablocki: kind of medium and you know a lot of people find it really easy to watch movies, most people like movies, and you know it's kind of like ice cream in my mind.

[Laughter.]

Nadine Vogel: I like that.

Isaac Zablocki: Yeah and then and and so, so all of the work that we try to do here at at the Marlene Myerson JCC Manhattan, which is the home to all of our film festivals.

Isaac Zablocki: is to see film as a tool for social change as a tool for change in general as an impactor as not not just entertainment sure entertainment's great I don't belittle entertainment I.

Isaac Zablocki: Think um let's think about how this really deepens our communities experience and and that connects really I think everything that we try to do and how we approach film.

Norma: awesome.

Nadine Vogel: Well, I think that's so important, because if we if we look at film, as you say, as as a way to change or influence.

Nadine Vogel: Not just entertain, but to do both, then I think we have to be extremely extremely mindful, the studios needs to be extremely mindful about what gets put out there, would you agree.

Isaac Zablocki: With great power comes great responsibility is that what they said about spider man or.

Nadine Vogel: Exactly.

Isaac Zablocki: Yeah.

Nadine Vogel: Exactly.

Isaac Zablocki: I think, yes I think there's there's the.

Isaac Zablocki: Art house movement that might and general movement that might need to try to find ways to balance out what's going on in Hollywood and.

Isaac Zablocki: I do believe that Hollywood is changing for the better, but I think yeah I think every filmmaker every producer every distributor needs to think about like How is this film making our world a better place.

Norma: Yeah.

Nadine Vogel: And, and I would assume when you say that you mean through the story, but then also through the actors and actresses that are portraying the characters.

Isaac Zablocki: What are the messages we're putting out there, what are we showing our world, how are we showing our world, is it coming you know, are we showing our world as a diverse place or as a as says the opposite, are we showing.

Isaac Zablocki: Our world with true authenticity or or are we, you know kind of phoning it in.

Isaac Zablocki: And, and so much more like what messages, how are we, you know who's the cool kid in this movie who's the bad kid in this movie and.

Isaac Zablocki: What is that saying to to our how our parents reacting how our parents behaving I mean life does not does mimic art in the case of.

Isaac Zablocki: movies for sure.

Nadine Vogel: Right. And what's the conversation we're having as a result.

Isaac Zablocki: Right right, how are we taking that further, how are we taking this deeper or are we just saying, are we sitting there and applauding and saying great that that we saw this, or are we actually taking action are we actually using this you know I think movie should be a starting point for a conversation.

Isaac Zablocki: Are we having are we taking it further and having those.

Isaac Zablocki: Discussions and sometimes I think movies can take us into into areas that we're not so easy to to approach.

Isaac Zablocki: One one program that we've been doing here as part of one of our programs is talking about death, you know that's a really hard topic to talk about.

Norma Stanley:  It is.

Isaac Zablocki: And let's show some movies that approach that that allow you to begin to have the conversation, and you know take us out of our comfort zones, a little bit and talk about you know some things that are that are really real. And right.

Nadine Vogel: No. Absolutely.

Nadine Vogel: No death is real, what do they say death and taxes right.

Isaac Zablocki: No good tax movies that's the problem. 

Nadine Vogel:  Yeah.

[Laughter.]

Nadine Vogel: Exactly.

Norma: Well, we're actually getting closer to movies, like Purge, I mean it's getting really scary out here.

Norma: Where art is imitating life or life is imitating art.

Isaac Zablocki: yeah.

Nadine Vogel:  That's true norma.

Nadine Vogel: Now Isaac. I think you spent time at miramax films. 

Norma: When you were at miramax did you find, as you were working in that space um an opportunity to.

Norma: to incorporate the disability community and is that something that would that interest came from is that is that where you um originated the opportunities to say how can we incorporate more people with disabilities in film.

Isaac Zablocki: I like to joke that everything I do today today is thanks to miramax because when I was there I learned exactly what I didn't want to do and.

Isaac Zablocki: want to be, and where I didn't want to be and it's it's it's like you know till this day now I don't know how many years later 18 years later.

Isaac Zablocki: I am still completely motivated by this notion, and I didn't even know about half about much of it seems that that all the stuff that was going on at miramax that.

Isaac Zablocki: is now kind of public you know I knew it was a bad place and I knew that wasn't necessarily the way I wanted to spend my life in working film and doing so, I wanted to do my work to have more meaning.

Isaac Zablocki: And, and I wanted to work in an environment that was.

Isaac Zablocki: Safe and accepting and.

Isaac Zablocki: kind and and.

Isaac Zablocki: brought out the right messages now.

Isaac Zablocki: I mean, I do believe that miramax is.

Isaac Zablocki: has brought some amazing films to the public and and i'm glad they they managed to out of all of that kind of.

Isaac Zablocki: Unfortunate environment they managed to actually do some good to this world both artistically I think there's great films out there and message wise great films out there i'm not criticizing the movies, they made.

Isaac Zablocki: But i'm actually even surprised that out of such a volatile environment that that that real goodness can come.

Isaac Zablocki: And and i'm grateful that you know I did not think about my work with ReelAbilities or disability work when I was there, it actually it was more like you know, I have to give my life more meaning and and find another way to approach film that's healthier that's.

Norma: So where did this impetus come from, for what you and when you started in incorporating and looking for opportunities to showcase the people disabilities and their lives and Community through film where did the impetus come from.

Isaac Zablocki: So I have a personal connection to disability, but, honestly didn't come from that it really came from the Cinematic side of things and seeing that if my goal is to.

Isaac Zablocki: To use film as a way to elevate voices that aren't heard enough possibly hardly heard at all, and then, then you know there's a lot of film programs, a lot of film festivals out there, we don't just need another film festival.

Isaac Zablocki: I would, I was feeling that there was a great need for more films on disability to have a platform to be celebrated to have those voices really get out there.

Isaac Zablocki: And it's been a real uphill battle for ReelAbilities, but then you look at where we are now and how much has changed, and what went on, with CODA this year, at the Oscars and.

Norma: Yes.

Isaac Zablocki: And you see that you know, a revolution is really happening and and and it's kind of like it's amazing to look back cuz cuz you know when we started ReelAbilities 15 years ago.

Isaac Zablocki: There was none of this going on there, there was you know only inappropriate representations in the mainstream but we're seeing a huge difference in in the submissions we get in the quality of the films and and really in the messaging too.

Norma: That's awesome I do believe we have to take a quick break and come right back, so we will come right back with disabled lives matter, and you guys stay tuned while we continue to speak with Mr Isaac Zablocki stay tuned.

Voiceover:  And now it's time for a commercial break.

[COMMERCIAL]
Are you familiar with Springboard Consulting.  If you are, you are certainly aware of our annual Disability Matters Awards. This year, 2022, we will live-stream our Europe awards on July 26 & 27, that event is being hosted by Barilla.  And later this year, our Asia-Pacific awards are being live-streamed on November 9 & 10, and that event is being sponsored by Manulife.  Don't miss out! For more information visit www.consultspringboard.com.

Voiceover:  And now back to our show.

 

Norma: And we are back with disabled lives matter and we are speaking with Mr Isaac Zablocki and he is.

Norma: Are you, what are the we were talking about ReelAbilities and why you thought it was an important you know important venture into an effort to go ahead and create these opportunities to tell the stories and filmmakers who aren't you know aren't embracing.

Norma: The disability community and all the all that's out there to be told, and so you said, but you also had a personal connection, what is, that personal connection.

Norma: To the to the Community.

Isaac Zablocki: I mean there's so much, but I mean I personally have and this is something I wouldn't have said 15 years ago and kind of like you know kept it to myself, because I thought I would never get a job if people knew that I had a learning disability.

Isaac Zablocki: my brother is physically disabled and my cousin's on the spectrum and it's just played a big part of my life from day one.

Isaac Zablocki: And and and kind of like I I was lucky enough to grow up in an inclusive world and and I recognize that not everybody is not everybody sees people with disabilities and I think.

Isaac Zablocki: that's part of what ReelAbilities tries to do is given opportunity for people with disabilities to.

Isaac Zablocki: to actually be seen and through movies it's a great way to do it because I, you know I gave my ice cream theory before, because you know you're coming to a movie.

Isaac Zablocki: and hopefully you'll you'll you'll come for the entertainment and stay for more and if you're from the disability community.

Isaac Zablocki: And you know have grown up in a diverse in the same company, the same kind of diversity that I grew up with then then finally there's a place for you to actually see your world see the world the way you see it on the screen.

Norma: Absolutely.

Isaac Zablocki: And not just not just some in the slanted way and I think I think.

Isaac Zablocki: Hollywood has hurt a lot I think Hollywood Hollywood in disability does not mesh perfectly it could there's no reason for it not to I think Hollywood.

Isaac Zablocki: Has has you know set up the a standard of what we see on the screen, that is not necessarily the reality and and keeps people in the reality.

Isaac Zablocki: In some ways out of reality.

Norma: Absolutely and that's one the reasons why nadine, and I do disabled lives matter to generate the the opportunity to share.

Norma: All the amazing stories that are out here that they tend not to hear about we're both also mothers of children.

Norma: with disabilities, so we understand that there's so much to be told, then there's so many there's so much there's just so much.

Norma: there's so much that we want to make sure we fill in the gap in our own little way.

Norma: Through the work that we do and as as parents and as advocates, and so we get excited when we get to meet people like yourself, who are taking their craft and making sure that the Community is represented in a way that they need to be represented, so we thank you for that so.

Isaac Zablocki: It's a pleasure.

Norma: Go ahead.

Isaac Zablocki: No. it's a pleasure, and thank you for your work it's it's you know, we need to have as many as many people in this in this campaign as possible.

Norma: Absolutely so what are some of your favorite moments with ReelAbilities and some of the projects and artists that you were able to discover through the process of the film festival.

Isaac Zablocki: Oh that's an unfair question on so many levels, first of all, there are so many great moments every year, every year, I listen i've run many film festivals annually, as mentioned before, and ReelAbilities don't tell the others, but ReelAbilities is by far i'll say the most impactful.

Isaac Zablocki: And every year, I am like blown away by the responses by the quality of the films by the the.

Isaac Zablocki: By the just events that happened there the conversations and and the reactions of the audiences it's really it's mind blowing and some of it is from.

Isaac Zablocki: I mean, I was, I was looking through an old email, the other day, and I saw an email that I wrote about about a about one year how our closing night because we attracted a we attract the disability audience, we had a dance party afterwards and inclusive dance party.

Norma: How cool.

Isaac Zablocki: A mother came over to me asking me for pictures of her daughter dancing for the first time in public.

Norma: Wow.

Nadine Vogel: Oh my gosh.

Isaac Zablocki: We provided a platform for that, and this goes on every year at the at the festival there's there there's audiences that are connecting for the first time audiences, who are veterans.

Isaac Zablocki: Who are connecting for the hundredth time and just really feeling that this is not like anywhere else.

Isaac Zablocki: We try every year to create a really inclusive environment, and that makes me really proud every year, and every year we have to learn, we are we're the most accessible film festival i'd say in New York for sure and.

Isaac Zablocki: And yet we are learning constantly and we are finding ways to make people feel more welcome.

Isaac Zablocki: This pandemic taught us that we taught we learned something like we used to run in over 40 locations throughout New York to be more accessible, you know people shouldn't just have to come into.

Isaac Zablocki: midtown Manhattan in order to see see a disability, film, we should go to them too and then, when we had our first virtual film festival we suddenly we're getting all these emails that that this that this is the first time they could attend ReelAbilities they've wanted to over the years.

Norma: Wow.

Isaac Zablocki: And audience members couldn't because of their disability, now that we're back in person we're keeping that.

Norma: Absolutely. 

Isaac Zablocki: We're keeping the virtual right. And we continue to hear from people their gratitude for, for you know, making sure that people can access, however, they can.

Nadine Vogel: Isaac this is.

Nadine Vogel: Nadine i'm hoping y'all can hear me.

Norma: Yes.  

Nadine Vogel: I had an amazing opportunity to attend ReelAbilities film festival in Manhattan number of years ago and it was interesting because.

Nadine Vogel: My company springboard we've had an opportunity to work with different film festivals, and by far by far you lead the way from the standpoint of accessibility.

Nadine Vogel: And really just every aspect of making sure everyone is comfortable, obviously including people with disabilities, one question that I had is.

Nadine Vogel: Do you feel being that you're affiliated with the JCC that there's anything from the Jewish community that impacts this in a slightly different way.

Isaac Zablocki: that's a big question, I mean I mean we constantly debate like you know.

Isaac Zablocki: The relationship there, I mean the the leadership of the JCC has made ReelAbilities what it is, and that's really been really great, this is not a Jewish film festival at all.

Isaac Zablocki: This is a be i'm happy to connect it to Jewish values, I think all the religion religions out there, hopefully have positive reviews of inclusion and and and making sure you know, I mean we're we were all made in the image of God and seeing the humanity and everyone.

Isaac Zablocki: But the truth is, this is about a Community effort and the JCC here in Manhattan has has really put an emphasis on disability inclusion, as well as other kinds of inclusion, but but i'm here to talk about the disability element.

Isaac Zablocki: And they and that's what allowed ReelAbilities to exist in place like this and they put the effort in and allow us to to to grow and expand even way beyond the JCC I mean ReelAbilities is in cities across the country and.

Nadine Vogel: That's right.

Isaac Zablocki: And it's it's really a much larger program than just a Community Center in Manhattan and.

Nadine Vogel: Right.

Isaac Zablocki: And that's something, because I think also came from, not every institution going to allow that to happen, but.

Nadine Vogel: Exactly.

Isaac Zablocki: the JCC really saw this saw this as going beyond just like you know its personal goals to seeing this as a much broader important topic to take beyond.

Nadine Vogel: yeah so so i'm curious if we were sitting down having the same conversation five years from now, maybe, maybe again 10 years from now, how would the conversation be different. 

Isaac Zablocki: Well.

Nadine Vogel: Or would it be. 

Isaac Zablocki: Well. I would imagine we would be where we are 5 or 10 years ago, as far as the quality and the mix, I mean I mean so much has changed the movement has changed the language has changed.

Isaac Zablocki: The concepts of inclusion, I have changed in the last two years in many, many ways and has become kind of at the forefront.

Isaac Zablocki: of a lot of people's agendas.

Isaac Zablocki: In five to 10 years from now, I mean i'm always saying I want ReelAbilities to become obsolete.

Isaac Zablocki: That you know disability and every other dis, and every other minority is fully represented appropriately and authentically.

Isaac Zablocki: In every field that you will not need a festival like this, the truth is, when I think about it is that maybe maybe they'll still be a place that needs to bring.

Isaac Zablocki: These films together and highlight them and kind of like like create a space for the disability Community maybe maybe we will be reaching the mainstream fully, but although i'm sure there.

Nadine Vogel: [Snicker.]

Isaac Zablocki: Will be work that needs to be done, but but also have a space, just to celebrate and to recognize.

Isaac Zablocki: A unique community that kind of most of its members don't even know that they're a part of it or don't even like to recognize they are part of it.

Nadine Vogel: Right.

Isaac Zablocki: So, so I think I think they'll still do that place from there, I didn't want to want to emphasize like one of the changes that's that's happened that I think is an important emphasis to I think there's a lot more inclusion, the question is, is the inclusion of quality and is it responsible.

Nadine Vogel: Right.

Isaac Zablocki: Those are things. That and and you know, anyone can decide what quality is there, these are subjective terms of quality and and responsible and responsible.

Isaac Zablocki: But, from my perspective, we want that's what we try to do at ReelAbilities and we're constantly evolving with that movies, that we showed at the very beginning of ReelAbilities we might not show now.

Nadine Vogel: Got it.

Isaac Zablocki: Because of our changing and evolving approach.

Isaac Zablocki: 10 years from now, some of these films, we might say, you know, this is, this is not how we. want to.

Isaac Zablocki: Present disability.

Nadine Vogel: Right right. so i'm wondering, as you talk about quality and responsibility How does that seep into I mean, I think it should be how doesn't seep into the film schools and and what's being taught today.

Isaac Zablocki: yeah yeah I mean that's that's where it needs to start filmmakers need to take this into account, need to be aware of.

Isaac Zablocki: First of all, authentic representation, you know, everybody a lot of people grew up on films that use disability and kind of a.

Isaac Zablocki: i'd say a way to to kind of like you know get attention and not necessarily to tell a real story of what of what disability looks like and and how it should be portrayed.

Isaac Zablocki: I think I think film students should be taking classes in this I go and some film schools throughout the year and talk about.

Isaac Zablocki: About especially they want to know about accessibility, how to make your films accessible.

Nadine Vogel: Right right.

Isaac Zablocki: So yeah you're making a your film and you're learning about how to write up a budget and and you have to know that that that just like you're putting money aside for color correction. 

Nadine Vogel: Um hmm. 

Isaac Zablocki: And for sound, put money aside for captions and audio description, so when you submitted think about this when you submit it to your first film festival, the first time, your film is going to be shown right now.

Isaac Zablocki: 99% of the films being submitted do not have any of that accessibility, which means the selection committee can't include somebody who's necessarily deaf or has.

Nadine Vogel: Right.

Isaac Zablocki: So these films aren't even being selected by the Community itself, which is something that we we try to do.

Isaac Zablocki: Within our selection process so, so this is something that really needs to change from the very beginning, people need to start start talking about how they make their films accessible.

Nadine Vogel: I think that that's so critical, because when you know I have opportunities to work with the studios you know, by the time it's at the studio this should already be worked out.

Norma. Absolutely.

Nadine Vogel: But then the studios are challenged right norma you know we hear from the studios about their challenge they don't know what to do and it just delays production, I mean it complicates the whole in an already complicated process.

Isaac Zablocki: there's a long yes there's something I want 10 year 5-10 years from now, I want all the films that come to ReelAbilities to already be captioned and audio described and fully accessible because right. now we're seeing the.

Isaac Zablocki: Numbers grow from year to year. it went from one. To three.

Isaac Zablocki: I want to be at the 10-20 mark in in five years.

Nadine Vogel: Got it.

Isaac Zablocki: I hope to see more of that I want people to actually use them, you know we we create.

Isaac Zablocki: We create captions for all of our films and then I see them going to film festivals across America and around the world and not using the captions because I mean that, even if a director asks, can you share it with captions film festivals will say no, no, no, we don't do that that's.

Nadine Vogel: Right.

Norma: Wow.

Nadine Vogel: And I know. I know.

Isaac Zablocki: And that's, of course, something that can be argued, you know you're you know you're showing foreign films with subtitles why can't you. show captions.

Norma: Absolutely. Exactly.

Norma: it's amazing.

Nadine Vogel: Exactly exactly well on that note, I cannot believe this, but we are out of time, Isaac it has been a pleasure, a.

Nadine Vogel: pleasure speaking with you today, I personally love ReelAbilities.

Norma. Me too.

Nadine Vogel: I'll get back in touch with.

Nadine Vogel: You because I have some ideas on how to promote it even further and i'm really excited about this so again, thank you for taking the time.

Isaac Zablocki: Thank you for doing this and, and please do do I would love to hear more on how this can be promoted.

Norma: Awesome.

Norma: Yeah.  I go to the one in Atlanta all the time, so I love it, so thank you so. Much. For all you do.

Isaac Zablocki: Thank you.

Nadine Vogel: Well norma, as always, thank you for being my amazing co host.

Norma: [Laughter.] And thank you for the opportunity.

Nadine Vogel: And to all our listeners.

Nadine Vogel: We look forward to seeing you on another episode of disabled lives matter they really do we are more than just a podcast we are movement, bye bye everybody.

Norma: be blessed.

Closing comment:  [Music playing in background.] Thank you for listening to this week's episode of disabled lives matter. We look forward to seeing you next Thursday.  Have a great week!

Disclaimer: The views, information, or opinions expressed during the Disabled Lives Matter podcast series are solely those of the individuals involved and do not necessarily represent those of Springboard Global Enterprises, Springboard Productions, and its employees, contractors, subsidiaries, and affiliates.  The developers of the Disabled Lives Matter podcast are not responsible and do not verify for accuracy any of the information contained in the podcast series available for listening on the Podbean hosting site and/or any other associated hosting entity. The Primary purpose of this series is to educate and inform, and does not constitute disability, medical and/or other professional advice, and/or service(s). This podcast is available for private, non-commercial use only. Advertising incorporated into, in association with, or targeted toward the content of this podcast, without the express approval and knowledge of the Disabled Lives Matter's site developers is forbidden. You may not edit, modify, or redistribute this podcast.  The developers of the Disabled Lives Matter site assume no liability for any activities in connection with this podcast or for use of this podcast in connection with any other Website, Computer, and/or listening device.

 

 

S2-Ep14_Alfacena_Millie_Barrett

S2-Ep14_Alfacena_Millie_Barrett

June 2, 2022

Season 02, Episode 14
Co-Hosts: Nadine Vogel & Norma Stanley
Guest: Alfacena "Millie" Barrett

Intro: [Music playing in background] Disabled Lives Matter... here we go!

Voiceover: Hello and welcome to this week's episode of the disabled lives matter podcast. Let's welcome co-hosts Nadine Vogel and Norma Stanley.

 

Nadine Vogel: Hello everyone i'm nadine vogel your co host of disabled lives matter, this is an amazing podcast but it's not just a podcast, it is a movement and helping me in this movement is norma stanley my amazing co host.

Norma: Hello everyone.

Nadine Vogel: hey norma I hear that we have a fabulous lady, we are interviewing today.

Norma: Yes, yes, Miss Alfacena Barrett and her everybody knows her as millie I actually know her as an amazing woman who has overcome so many different struggles and challenges and.

Norma: You know she actually adopted her nephew and you know he is a model and he rides horses and he does all kinds of amazing things.

Norma: And you know what I love about knowing the story is that they um you know she gives him life and vice versa, and so it's a beautiful thing to see, and I just wanted her to be able to share.

Norma: How she's done the things that she's been able to do over the years, with him, because he's you know millie just come on and say hi and just.

Norma: Come start telling your story.

Millicent: Yes, I am Alfacena Millicent Barrett and everybody affectionately call me millie because when I was growing up, they have problem calling Alfacena.

Millicent: So I was, I was brought up with my middle name instead and in shortened form of Millie. Yes, so I want to tell you first about my nephew/son, if you should say to me to anybody that your aunt calls you he will let them know that's not my aunt, that's my mom.

Millicent: So he lost both parents within a year his father died in 2006 of June and then his mother, shortly after his father died I got a call that she was diagnosed with cancer.

Millicent: put up a good fight, but she didn't make it so she died May of the following year, which is 2007 during that year was the time that I had surgery for my third cancer.

Millicent: And um there was no way for me to leave him in Jamaica, because he was in Jamaica they do have care for special needs but it's not spread wide in the country.

Millicent: I know there was a school, which was close by to them that they could have used but earlier on his mother did not choose to send him to that school she sent him to the regular school because he thought he that he would his speech.

Millicent: would be developed much better which didn't happen. Any how.

Millicent: lucky for him, he had a visa already so I told them to bring him to me, I was discouraged by my family members, because they know what I was going through.

Millicent: But it's like I can say that God had his plan, because when he came I met the right persons everybody that I needed in my life for that moment to get him settled in the US was.

Millicent: brought to my path so his adoption went through like a breeze they told me he had to be with me a year for his adoption to go through, but the person told me go ahead to the Court and get.

Millicent: custody um.

Millicent: not custody.

Nadine Vogel: Guardianship.

Millicent: guardianship that's right for him and getting him enrolled into school that was done.

Nadine Vogel: Millie, what type of disability does your son have.

Millicent: Oh sorry my son is 26 year old young man now with down syndrome.

Millicent: Okay, and his intellectual disabilities is consider moderate.

Nadine Vogel: Okay okay.

Millicent: When he came to me he has very little spoken language.

Millicent: It was very good of receiving the receptive language was good, but is, you know is. I missing the word now, his expressive language is very limited right, so any was like 11 at the time when I adopted him.

Nadine Vogel: Well you're you're thrown into the disability Community like overnight, what was that, like, for you.

Millicent: RIght. You know what when he was born with disability and it took me a while to remember that I used to go to a few meetings, even before so it's as if God was preparing me, so I had I got some pamphlets and i sent it to his mother, so when he came to me now.

Millicent: I wanted to find out everything that I need to do for him to progress.

Nadine Vogel: Right.

Millient: So I went to all the meetings inquire find meetings and go to different meeting I took him to a down syndrome doctor.

Millicent: have them getting fully checked out, and I said to him what level, he is and the doctor was like there's no level, and I was like because I know i've seen different features.

Millicent: Then I guess, I should say of down syndrome, so I thought it was a different level, he said, there was no different lever and.

Millicent: I asked a lot of questions I got him into school.

Millicent: And the class, he was in the teacher were very good they communicated with me they were the ones who introduced me to have him first back riding somewhere along the line and he loved it and for the first time.

Millicent: I think that was like two years later, so I realized that he was disappointed I recognize that feature on his face he wants to go riding that day, and it was too hot.

Millicent: And they call and say you know it's so hot to take the horses out and that look on his face tells me a lot and that he was very disappointed, even though he couldn't express himself.

Millicent: So in 2012.

Millicent: is like I got just like I tell my story, just like Abraham got a call to move to a place where god's gonna bless him that's how I felt that it's time for me to move because I was thinking about him what if I get sick.

Nadine Vogel: Right.

Millicent: What's going to happen to him, because I do have relatives in.

Millicent: At first it wasn't Georgia, as my brother is in Florida, and I was trying to move closer to him and he said they're planning to get a job in Georgia.

Millicent: And when I got off the phone I didn't even call him back and said, you know what i'm going to go to Georgia, because I have other relatives here and I have friends, who I grew up with that would be closer to him.

Nadine Vogel: That support system.

Millicent: Right, moral support.

Norma: Right, that you have to have.

Nadine Vogel: Right.

Nadine Vogel: So, how has your life changed since then.

Millicent: Basically.

Nadine Vogel: What have you learned about.

Nadine Vogel: You and the disability community.

Millicent: Yes, it's going to take a lot to say how my life has changed because when I adopted him I just gone through a divorce and I had a House so being divorce.

Millicent: I was free to do whatever I wanted to do to go wherever I wanted to go, so that got changed because now, I have to change my life to cater to him.

Millicent: And about his needs and can't go wherever I want to go I have to make sure, things are OK for him before I can plan to go anywhere luckily, for me, I got put out of my job at 2009.

Millicent: Because of my health so that made it easier.

Nadine Vogel: Right. 

Millicent: Yes. I didn't have to worry about childcare and and stuff like that, when I was in Delaware so i'd be there when he goes on the bus.

Millicent: When he just came I was still working so two years later, two years later, was when I stopped working.

Millicent: and during that time during that first two years his brother, he has an older brother, he has older siblings was living on the next street so I did have a support system, but they move away from Delaware to Texas, because of jobs.

Nadine Vogel: But Millie, my question is more about you know what have you learned about the disability Community having a having a son, you know and now an adult son with disabilities, what has that taught you.

Millicent: That taught me that they are as regular as possible, if you make it look and look for the resources that they need their life can be as normal, as any other child.

Millicent: He in spite of his barrier to language he was quick, he was smart he learns to do everything he's good, with his hands he's he's good with his eyes he's very observant so whatever you want to him to do you just show it to him, so I realized that they can do almost anything.

Millicent: Just as long as they have the support the support system.

Nadine Vogel: I also think that and norma you and I have talked about this and it's also based on expectations.

Millicent: Yes.  

Nadine Vogel:  Expectation that they're going to do all these things.

Millicent: yeah.  

Nadine Vogel: You force them to kind of live up to that expectation, so to speak.

Norma: Absolutely.

Nadine Vogel: Right and norma for you too.

Norma: you can't coddle them, you have to really.

Norma: put them to the test and let them see themselves as able to accomplish what you expect of them.

Millicent: Yes, that's what I realized because comparing to some that i've seen and with Vilair, they can be discipline don't let them do what they want to do.

Nadine Vogel:  Right.

Norma: They will manipulate you or try.

Millicent: yeah just like regular children just.

Millicent: Like, for example, when I was with his mom before she passed and they've came for a visit and we went to a store and he was running around and.

Millicent: She I said to her, why are you so upset normal children do that, and she was like he's normal which I get what she's saying.

Millicent: But that's what regular children do the mess around in the store and play around stuff because then he was very much younger than 11 you know So yes, they they can be as normal as ever.

Nadine Vogel: Right yeah and I, and I think when we you know refer to the children as being you know typical and how they compare to the typical child, you know one of my, one of my, you know things is.

Nadine Vogel: What makes that child typical like why why, if they have special needs are they not typical right that distinction is always is always bothered because I also think that that sends a message.

Nadine Vogel: And not a message that we want now what I find really I want to say fascinating and overwhelming knowing about millie is that when you were doing all this.

Millicent: mm hmm.

Nadine Vogel: You had just experienced cancer, for the third time.

Millicent:  Yes yeah.

Nadine Vogel: Right, I mean think it, you know norma, you know think how difficult it is, you have a child, born with a disability right you're not expecting it but could you imagine, having just gone through cancer three times and bringing all that in. All at the same.

Norma: Although I can't I can't and that's why I said that I really think people need to know that strength that you have to have gone through what you're going through and still.

Norma: Having the challenge of raising your son, who came to you know as a young boy, but who is you know needed all you needed all your help and how did you develop that strength. where do you think it came from.

Millicent: Well, that has to do with my faith in God.

Millicent: Because I got him when I deal with the third one.

Millicent: But after i've got and it was so funny in the year that I had to adopt him I had to get a clean bill of health which happened.

Millicent: And right after 2007 2008 the cancer return, one of the cancer return, because I have one the MALT lymphoma for me it's treatable but it's nagging it will come back time and time again, so it came back in 2008.

Millicent: And I don't think the doctor treated me properly that's my theory, because it came more aggressive in 2009 but like I said at that time, his brother was living next door, so I had a support system so.

Millicent: I was able to do, treatment and he was as long as his needs are met, he was quiet, he was helpful, he was very helpful.

Millicent: You could ask them to do things and he.

Millicent: would do it, he was a child who will keep his room clean that's what I loved about him.

Nadine Vogel: Wow.

Millicent: He would make his bed and his room had to be clean, so I didn't have any of that issue with him and he was helpful and oh go ahead.

Nadine Vogel: No, I was just gonna say we have to go to commercial break, but when we come back I norma I would love you know I believe millie has a book I would love to learn about the book and just.

Nadine Vogel: You know what let's talk about how you face cancer, not once, twice, three times, but if I understand correctly, five times.

Millicent: Five times right yeah.

Nadine Vogel: Oh my gosh. So for our audience, that alone should keep you at the edge of your seat don't go anywhere we'll be right back.

Voiceover:  And now it's time for a commercial break.

[COMMERCIAL]
Are you familiar with Springboard Consulting.  If you are, you are certainly aware of our annual Disability Matters Awards. This year, 2022, we will live-stream our Europe awards on July 26 & 27, that event is being hosted by Barilla.  And later this year, our Asia-Pacific awards are being live-streamed on November 9 & 10, and that event is being sponsored by Manulife.  Don't miss out! For more information visit www.consultspringboard.com.

Voiceover:  And now back to our show.

Nadine Vogel: Hello hello, this is nadine vogel I am joined by my co host norma stanley hey norma.

Nadine Vogel: Hi, and we are bringing to you another great episode of disabled lives matter and just before we went to break I I put a teaser out there, but it's not it's reality.

Nadine Vogel: That our guest today Millie Barrett has experienced cancer five times, while caring for a child, with a disability and now has written a book so norm i'm going to turn it over to you.

Norma: Well, you know millie, we really need to understand and would love to be able to share with our audience, how you did it five times. is it the same cancer, are they different cancers. What happened?

Millicent: Okay.

Millicent: No it's three different cancer, but I went through cancer five times the first one that I got diagnosed with was a blood cancer.

Millicent: The MALT Lymphoma for me is considered to be treatable, but it can come back time and time again and, for some reason it came back in 2008 and 2009. 2009 they thought they we're going to lose me because the lymphoma.

Millicent: was in my lungs and it was so bad that the day when I left work and didn't return um I had so much pain in my back and luckily my nephew.

Millicent: Had just had a baby, so he was next door, I was able to call him to go upstairs my house and get my breathing treatment, so that was the first cancer, then I end up having breast cancer and my doctor had said to me, because you had that cancer you, you are 10% likely to get another cancer.

Millicent: So that keep me on alert.

Millicent: I was very attentive to my body which everyone should do that if you have any changes in the body check it out.

Norma: mm hmm.

Millicent: Know your body that well.

Millicent: [cough] Sorry.

Millicent: and um.

Millicent: So I had a pain.

Millicent: One evening when I came home from working in my right breast and I just finished my mammogram.

Millicent: And they did call me back for an ultrasound and they came to the conclusion that it was just a cyst.

Millicent: [cough] I'm sorry something. is tickling my throat.

Millicent: It was a cyst.

Millicent: So I went to my doctor right away, I did not wait.

Millicent: When I went to him that's when we notice there was a mass on my breast.

Norma: Wow.

Millicent: And he made an appointment for me to go see the surgeon breast surgeon, I made the appointment and while we're waiting for that appointment my mom died.

Norma: Wow.

Nadine Vogel: Oh my.

Millicent: So I had to cancel that appointment head to Jamaica to bury my mom.

Nadine Vogel: Oh my gosh.

Millicent: Yes, and then, when I came back, I went through a full mastectomy they take a breath off and I tried for the reconstruction that didn't work, so I was doing well.

Millicent: After.

Millicent: The breast cancer and something interesting which I placed in my book, which i'll talk to you a little about three years later I got uterine cancer.

Norma: Oooh.

Millicent: Yes, which one of the medication that I was taking to prevent a breast cancer from coming back when I read that bottle, it said a side effect was uterine cancer.

Norma: Yes.

Millicent: But I had a full hysterectomy I had surgery I didn't go through chemo for that, but it was shortly after I had May.

Millicent: May was when I had the surgery, and then my nephew which is Velair my son now father died that June so those were the things.

Norma: That was like a roller coaster of life. circumstances.

Millicent: Yes, so when I used to talk to people about these things they said you need to write a book and i'm like write the book I used to have problem writing in school.

Norma: mm hmm.

Millicent: But when I got my when they lymphoma came back, and that was a struggle, because I had a girlfriend who said to me.

Millicent: Because if the doctor treat you so many times, sometimes these doctors, just like give up on you and I could not believe those weren't came through.

Millicent: Because the doctor like send me off to somebody else, and I was like Why am I going to that doctor that doesn't make any sense.

Millicent: And when I got to that doctor's office I kept the appointment because I had a relationship with that doctor, he said, why did he send it to me, and when he called his office, he was like.

Millicent: He's out on vacation I left that doctor's office and I came home and I start making phone calls luckily, for me, I had insurance that would take me across state line to get. care.

Norma: Good yes.

Millicent: Many people don't have that you know, so I called and I called like three different I call the lymphoma society, this time and they gave me this idea of doctors who take care of lymphoma and I want to put this in there before I go any further, if you have a cancer.

Millicent: Look, for the oncologist that specializes in your type of cancer. It's much better than going to a general oncologist.

Millicent: The doctor I was seeing first was a general oncologist so practically didn't know what to do so, I got to another hospital and they told me, I was going to get six treatments and praise the Lord I only got four and knocking wood until today i'm doing well.

Millicent: Like I told you, I moved to Georgia and start asking questions about my son So while I was being treated that's when I started my book.

Millicent: And it's like everything got revealed to me, I came up with the title, which is the Faces of Struggles, such as cancers are on the journey to God's Glory.

Millicent: So in my book it just didn't talk about cancer, it talked about divorce, because I was going through divorce, too and I call that I cancer too because it's like everybody was going through some form of struggle with marriages during that time.

Norma: And still are.

Millicent: I put a page in there about my son, because I said God must have a reason to have kept me and took his parents so God have a greater purpose for him.

Millicent: To keep me to keep leading him to where he needs to go, because I was the first one in my family got diagnosed.

Millicent: With cancer and since then my mom my dad my brother and sister in law, all died from cancer and i'm still here, yes, so I put that in my book, a page, let me see if I can find a chapter, that I still.

Nadine Vogel: You know, adding to all of his.

Nadine Vogel: you've lost your support system of your family.

Norma: Right, right.

Millicent: Yeah.

Norma: But the strength that you have and the determination and the will to continue to make sure that Velair had he needed to have to maximize his potential, despite what you were going through.

Norma: that's an added level of strength and courage and determination that you know truly has to have faith based situation because.

Norma: So many people today don't have half the challenges but give up on their children, give up on themselves and that's one of the things that we have to be so aware and try to see if you can connect with some of these people who lose hope.

Millicent: Yes.

Nadine Vogel: And whether and whether it's your.

Nadine Vogel: Religion or spiritual or anything that anyone believes in it doesn't even matter as long as it has the impact.

Millicent: Yes.

Nadine Vogel: Right, and it has the outcomes that millie that you have, because I, you have a big smile, you know people can see you, you have a big smile on your.

Nadine Vogel: Face. A big beautiful smile and and you know I can tell that you practice this mantra of life is good.

Millicent: Yes, yeah.

Nadine Vogel: And I think to norma to your point, you know people will have you know, an infection in their toenail and suddenly life isn't good.

Nadine Vogel: You know glass half empty half full and.

Norma: Definitely. It's perspective.

Nadine Vogel: Yeah Thank you that's the word I couldn't think of it. Perspective.

Nadine Vogel: That that i'm hoping that through this show you're giving everyone.

Millicent: Yes, that chapter about Velair I call it a special assignment I received from God.

Norma: hmm.

Millicent: I see it as an assignment.

Millicent: from God that.

Millicent: it's my duty and my place to make sure that he has everything he needs, and you know to cut to almost to the end.

Millicent: I was one of the person who was God for Covid because he was keeping me busy he has a busy schedule, he has work now he works two days a week is a working man and he loves it.

Millicent: He goes to work, two days a week, he goes to Bowling one evening he has writing one evening he has a church activity another he had a paint class I used to go to a placce for cheerleading.

Millicent: Whatever other Community activity, he loves to dance, he will dance, as long as the music is playing.

Millicent: And, not to mention Norma got me.

Millicent: Our connection the way norma and I met is.

Norma: Oh-oh.

Millicent: Yes we were, and then we have been friends, since that day.

Norma: He's an amazing model.

Millicent: Model.

Norma: An amazing model.

Millicent: That i'm still waiting to see him go on the world stage, because.

Millicent: That's where I think he'll really end up one of these days.

Norma: Yeah.

Millicent: He just loves it and then miss Sharon, let him do whatever he wants to do i'm trying to get him to do more.

Millicent: manly style walking straight down the aisle.

Norma: He does have a flare.

Millicent: He has a flare about it and they love it and he loves it he just and he loves to dress up so almost every Sunday he wears a suit to church.

Nadine Vogel: Wow.

Millicent: So I figured we could get suits to buy very cheap.

Nadine Vogel: um hmm.

Millicent: I go to the goodwill and get him suited out.

Nadine Vogel: Right.

Millicent: Like he has about seven different suits right now and.

Nadine Vogel: Wow. Isn't that amazing.

Millicent: He wears a suit Every Sunday to church and he loves when he received compliment about it.

Norma: Oh yeah they could tell when they looked and.

Norma: That's a lot of what we try to do like you said we tell the stories here.

Norma: On disabled lives matter and and hope that people can see that these communities that just like all of us that, just like everybody else, and we want our family members to live.

Norma: Their best life, just like we do and we got to do what it takes to make sure that happens because that's how we are, we are you know we have mothers were advocates, we are people who want to see see change positive for our community.

Norma: That's what this is about.

Millicent: What I realized is that.

Millicent: moving around the disability Community a lot of people didn't know a lot of stuff that are available.

Millicent: For them.

Nadine Vogel: Right.

Millicent: They like, how you know so much, but because I didn't birth, a child who was disabled I was gifted a child who was disabled.

Millicent: And like I told it's my responsibility for him to have the best life possible so I was going to meetings like once a week I had to go to meetings now because I kind of get what I need for him.

Nadine Vogel: Sure. Absolutely.

Nadine Vogel: Well Millie I just have to say, you know I know that that you feel very lucky.

Nadine Vogel: To have your son to have Velair but I gotta say I he's really lucky to have you he's really lucky, and I think that all of our listeners are better off because of hearing your story today.

Millicent: Thank you.

Nadine Vogel: So, unfortunately, we are out of time, I cannot believe the time.

Norma: It goes fast.

Nadine Vogel: I, but I just want to thank you.

Nadine Vogel: So much for for sharing your story for sharing about your book.

Nadine Vogel: and hopefully you'll keep in touch with us.

Nadine Vogel: And let us.

Nadine Vogel: know how things are coming along.

Millicent: Yes, well, thank you for having me, and now I can give you more of an update if anybody need information about the book.

Norma: Well give them the website real quick.

Norma: Was it.

Nadine Vogel: Right.

Millicent: It's on Amazon, but because I had to change publisher you have to get the one that is written by.

Millicent: lulu. Published by.

Millicent: lulu.com and you can go to that directly website lulu.com and get it.

Nadine Vogel: Okay.

Millicent: You can go to Amazon, but I rather you to lulu as you'll definitely find the correct one.

Nadine Vogel: At all thank you again millie and have a fabulous week.

Millicent: Thank you too for having me.

Nadine Vogel: Absolutely to our listeners.

Nadine Vogel: Thank you for joining us once again norma Thank you amazing co-host that I have and we look forward to the next episode of disabled lives matter bye everybody.

Norma: Be blessed everybody.

Millicent: Bye bye.

Closing comment:  [Music playing in background.] Thank you for listening to this week's episode of disabled lives matter. We look forward to seeing you next Thursday.  Have a great week!

Disclaimer: The views, information, or opinions expressed during the Disabled Lives Matter podcast series are solely those of the individuals involved and do not necessarily represent those of Springboard Global Enterprises, Springboard Productions, and its employees, contractors, subsidiaries, and affiliates.  The developers of the Disabled Lives Matter podcast are not responsible and do not verify for accuracy any of the information contained in the podcast series available for listening on the Podbean hosting site and/or any other associated hosting entity. The Primary purpose of this series is to educate and inform, and does not constitute disability, medical and/or other professional advice, and/or service(s). This podcast is available for private, non-commercial use only. Advertising incorporated into, in association with, or targeted toward the content of this podcast, without the express approval and knowledge of the Disabled Lives Matter's site developers is forbidden. You may not edit, modify, or redistribute this podcast.  The developers of the Disabled Lives Matter site assume no liability for any activities in connection with this podcast or for use of this podcast in connection with any other Website, Computer, and/or listening device.

S2-Ep13_Shelly_Simmons

S2-Ep13_Shelly_Simmons

May 26, 2022

Season 02, Episode 13
Co-Hosts: Nadine Vogel & Norma Stanley
Guest: Shelly Simmons

Intro: [Music playing in background] Disabled Lives Matter... here we go!

Voiceover: Hello and welcome to this week's episode of the disabled lives matter podcast. Let's welcome co-hosts Nadine Vogel and Norma Stanley.

Nadine Vogel: Hello everyone, this is nadine vogel and I am your co host of disabled lives matter we are a podcast, but we are more than a podcast we are a movement and joining me in this movement is my lovely co host norma.

Norma: hi everybody.

Nadine Vogel: Hey norma how's it going.

Norma: it's going great going great looking forward to speaking with our guest today.

Nadine Vogel: Absolutely cuz I gotta tell you with all the crazy things going on in the world, we can take a breath and interview someone who is doing amazing things right all positive. So Shelly Simmons. Shelly, thank you for joining us today.

Shelly Simmons: Thank you so much for having me. uh this is something that's new for me, so I appreciate your patience.

Nadine Vogel: Absolutely so Shelly you're the executive director at the statewide independent living Council in Georgia so tell us first you know what does the independent living Council do, what is your mission.

Shelly Simmons: Well, the statewide independent living Council we are a federally mandated organization so every state and territory in the United States has a S-I-L-C Office what we refer to as "silk".

Shelly Simmons: It is our main responsibility to develop our state plan for Independent Living, and this is a guy that we work closely with with our Center for independent living.

Shelly Simmons: Who are the service providers in order to address some of the needs that are going on within our state, we also work very closely with our legislature.

Shelly Simmons: To help create policy change that will benefit individuals with disabilities and when Then again, we also work with some of our state agencies, like our vocational rehabilitation our GA advocacy office and our Council on developmental disability.

Nadine Vogel: Got it got it now are all um silcs as you call them are all of them, the same, since, since it is federally funded are all of them the same throughout the country in terms of the mission and what they do, how they do it.

Shelly Simmons: Well, the mission can be different.

Shelly Simmons: And again, that kind of comes up when.

Shelly Simmons: you're developing your state plan what your mission will actually be ours is just to make sure that individuals with disabilities are.

Shelly Simmons: included within and can equally participate within their communities.

Shelly Simmons: For each.

Shelly Simmons: So each silc office can have, and they all do have different mission plans.

Shelly Simmons: And again, that all depends on what's going on within their state.

Nadine Vogel: Okay, so, even though it's federally funded it's more state driven.

Shelly Simmons: Correct .

 

Nadine Vogel: Got it got it are there are there criteria to be able to make use of the services.

Shelly Simmons: Well, for us, we don't provide direct service we're not the direct service provider, ours is more of a policy driven entity so.

Shelly Simmons: We provide also support to our Centers for Independent Living, so we're just trying to make sure that they have what they need in order for them to work with the consumer or their or their clientele.

Nadine Vogel: So, can you tell us the difference between what you do and then what the centers do and how you're all related.

Shelly Simmons: Absolutely, they the centers are kind of umbrellaed under us again we're policy driven, so we will try our best to advocate and educate the legislature, on what the needs are.

Shelly Simmons: For the centers to be able to do business trying to make sure that we have the right funding in place so that the centers can do what they need to do, we will also take on larger issues again that will cover the entire state.

Shelly Simmons: Here in Georgia, we have nine centers for Independent Living, and most of them cover several counties and then we have an area that's not being serviced at all, and we call that the unserved, or the wide area, and so what i'd like to do is.

Shelly Simmons: i'm trying to make sure that the state has full coverage and so. Those are some things that the SILC office will do.

Shelly Simmons: And then again transportation housing, employment. Those are some of the biggest things that we deal with in most them SILC offices and then some some of the same.

Shelly Simmons: issues and barriers that people with disabilities face so here in Georgia, one of our goals and objectives is to make sure that we have affordable and accessible housing.

Shelly Simmons: And so we try to work with developers and try to see how we can work closely together in order for new construction to go up for not segregated housing, but more inclusive housing, but to make sure that these things are affordable and accessible.

Norma: That's awesome.

Shelly Simmons: Our Centers for Independent Living, they are the consumer driven entity, so the centers may actually provide five core services.

Shelly Simmons: Information and referral, independent living skills training, peer support, and i'm gonna i'm now gonna forget a couple of them transition for individuals who are either transitioning from my high school to adulthood and also nursing home transition, and the fifth core service.

Shelly Simmons: Oh. system and individual advocacy.

Nadine Vogel: OK.

Shelly Simmons: So somebody has an issue the center will work with them to help educate them on whom they need to contact and what they need to do in order to do that, but each Center also has its own unique.

Shelly Simmons: spin and services and, depending on the region will determine what other services are being provided, but all five see there are five core services have to be fulfilled within the nine centers.

Nadine Vogel: got it it's it's again just based on premise it's for adults right, so it would be 18 and over 21 and over.

Shelly Simmons: No, in fact, we have a kind of a model here from the womb to the tomb.

Shelly Simmons: For anybody newly disabled, or a parent who might be have a child with a disability and just doesn't know about the resources that are out there and available, so no, we will work with anyone.

Nadine Vogel: So and that's from a policy standpoint, as well as from a Center standpoint?

Shelly Simmons: Correct.

Nadine Vogel: Wow I I did not realize that, so you know i'm on my familiarity with independent living centers is more in California.

Nadine Vogel: In Florida and and so you're right they do, where I had no idea I thought every one was the same.

Nadine Vogel: So this is this is really amazing to know um and the policies that you develop I mean obviously the centers because they are consumer driven they hear directly from families from individuals with disabilities, so they know what's needed.

Shelly Simmons:  Yes.

Nadine Vogel: Right at that level from a state level from a policy perspective, how do you, do you kind of hear what's going on at the Center level that rolls up and that's how you determine what you all need to do, or is it a different process.

Shelly Simmons: Well, for us and for me what I typically done, I will hold.

Shelly Simmons: Excuse me, town hall meetings around the state and I usually do that in preparation of developing our state plan so i'll state plan is every three years, and seems like we all wish that we could change that to five years.

Shelly Simmons: Because as soon as you get going and one. It's time to develop another one.

Shelly Simmons: And that's where we are right now we're in year two, and so I will be sometime this summer early fall doing town hall events around the state.

Shelly Simmons: In a way of spreading that we have virtual options, now that we can hear from more individuals and then we'll take the top three or four.

Shelly Simmons: and try to develop our state plan around that my mom also had a really good relationship with our Center diretors and also fund monthly meetings with them were able to kind of determine what are some of the main things that we need to focus on

Nadine Vogel: okay.

Nadine Vogel: And just like you said it's from you know birth to death right it covers all ages now at the Center level is there any criteria either financial or otherwise that someone needs to meet in order to receive services.

Shelly Simmons: They just need to have a disability.

Nadine Vogel: Disability of any type.

Shelly Simmons: Of any type.

Nadine Vogel: wow.

Shelly Simmons: Well you know some of the other state.

Shelly Simmons: organizations like our Council on developmental disability they mainly deal with D-D-D.

Shelly Simmons: I should say developmental disability and.

Shelly Simmons: intellectual disability i'm sorry, you know we live in a world of acronyms I have to be.

Shelly Simmons: Concious of what I say i'm in some way but there's anybody now, we may not be able to provide say the right service, and we will make those referrals and provide resources, but no, there is nothing required other than having a disability.

Norma: Can I ask a question?

Shelly Simmons: Yes.

Norma: Somebody called me not too long ago about she has a daughter, who has physical and intellectual disabilities, she went to college and um.

Norma: In a car accident, and has been you know basically disabled ever since and she's in her 20s and her mother's trying to make the home.

Norma: Really comfortable for her sensory issues and things like that and she's having issues with the H-O-A in whatever she's trying to do, in her front area.

Norma: For her daughter and she's trying to figure out who she should talk to about that and I think I may have referred her to your organization, but I I can't imagine the H-O-A would be so.

Norma: They don't seem to really have a sensitivity.

Norma: to that.

Norma: And I was just wondering, is that something that your organization will help address or refer or How does that work because H-O-As.

Norma: To me a little bit intrusive but how does that work, I mean she's on her own property trying to put in something on her yard that her daughter would enjoy from a sensory standpoint, as well as i'm not quite all sure, but somehow the H-O-A is not happy with it, and they're not responding to her you know.

Nadine Vogel: H-O-As, H-O-As have a life of their own, I can tell you.

Norma.  Ah.

Nadine Vogel: But Shirley i'm just wondering if that wouldn't be a protection and advocacy.

Norma: right.

Shelly Simmons: It would even for here in Georgia, our metro fair housing. That could be an.

Shelly Simmons: issue that they will take on.

Shelly Simmons: And we will refer that.

Shelly Simmons: individual to them in order to get the.

Shelly Simmons: The proper and correct guidance on how to address that. Ah granted H-O-As have and mainly I believe that it can be, for you know aesthetics how and made to look or anything like but as a reasonable accommodation she just has to be willing to kind of apply for it.

Norma: Yeah.

Shelly Simmons: But the metro fair housing will be a good option for her. too.

Nadine Vogel: Yeah the HOA um because we've actually had some involvement with that and.

Nadine Vogel: to your point shelley you know they look at aesthetics, they look at other things, and say they have a responsibility to the whole place and because it's private and it's not public, they don't even have to they don't fall under the ADA.

Shelly Simmons: Yeah.

Norma: Wow.

Shelly Simmons: That's true.

Nadine Vogel: Which is even just crazier, in my opinion, but.

Shelly Simmons: And I and again i'm thinking will be, and it will just mean some advocacy work for her.

Shelly Simmons: To speak with some of her neighbors.

Shelly Simmons: To say hey you know, this is what i'm trying to do and find out what why, are they so opposed to this.

Shelly Simmons: She really just needs to get out there and speak with her and even possibly present plans on what it might look like.

Shelly Simmons: Cause, you know you you hear one thing.

Shelly Simmons: But to actually see it could be something else may not be as overwhelming as they think it mgiht be.

Nadine Vogel: Norma, i'm so glad you brought that up because you know that's a topic that we've not addressed. in the past.

Nadine Vogel: And one I think that we should actually think about maybe even having a session, you know, on that because.

Nadine Vogel: People really confused about that a lot of people live in condos and buildings that have associations and board of directors and most of we find don't know what their rights are.

Nadine Vogel: And where they can go to get help, so we are on at that point where we need to take a short commercial break so let's do that and for our listeners don't go anywhere, we have more to talk about with shelly simmons be right back.

Voiceover:  And now it's time for a commercial break.

[COMMERCIAL]
Are you familiar with Springboard Consulting.  If you are, you are certainly aware of our annual Disability Matters Awards. This year, 2022, we will live-stream our Europe awards on July 26 & 27, that event is being hosted by Barilla.  And later this year, our Asia-Pacific awards are being live-streamed on November 9 & 10, and that event is being sponsored by Manulife.  Don't miss out! For more information visit www.consultspringboard.com.

Voiceover:  And now back to our show.

Nadine Vogel: Hello Hello everyone welcome back this is needing vogel i'm here with my Pal my co host norma stanley.

Norma. Hey guys.

Nadine Vogel: And we are talking with shelly simmons today and having.

Nadine Vogel: Just a fabulous discussion about you know independent living Council specifically the one in Georgia, the statewide but also independent living centers and how they all work together um.

Nadine Vogel: You mentioned shelley before the break about housing.

Nadine Vogel: That you know, having appropriate housing having enough housing so i'm just wondering if you can elaborate either on that or on some other initiatives.

Nadine Vogel: programs that you think are really important that you guys are focusing on because I want to talk about some barriers that exist, and I do you think housing is one of those barriers, I think it kind of connects.

Shelly Simmons: Absolutely, in fact, most of the barriers that people with disabilities encounter they all intersect and housing, nothing can be more critical well.

Shelly Simmons: They have some other things, of course, but.

Shelly Simmons: housing and I don't know you know how familiar, you are with the the, especially in the metro area of Atlanta the landscaping has changed and it's changing. There are cranes all over the place and it's all for luxury housing.

Nadine Vogel: Yes.

Shelly Simmons: So people with disabilities are being forced out of areas that have little to no transportation.

Shelly Simmons: Less access to resources like the grocery store or maybe even family and that's because of housing has become so unaffordable for many.

Shelly Simmons: Although people disabilities may be working there's a large population are relying on fixed incomes their social security or SSI or anything like that, and so their options are very limited, and so it is our desire to work with.

Shelly Simmons: Various developers and try to really advocate for more affordable and accessible housing, especially for individuals who may have sensory or physical disabilities a lot of these units, do not.

Shelly Simmons: exist, and once somebody gets into a unit and if it happens to be within an apartment complex they end up staying there because the stock is so limited.

Shelly Simmons: They can't afford to go anywhere else, and so we're just trying to change that conversation not only with our city leaders, but also with various developers and saying that we can make this happen now.

Shelly Simmons: You know, we might be able to catch up.

Shelly Simmons: The demographic is changing people are living longer, you know, and so we need to be able to make sure that we can accommodate everyone.

Shelly Simmons: And and with properties that are mixtures regardless of your income, and you will be able to stay with somebody else and may be at the very top of the chain, and with that we really try to promote inclusion So those are some things that we're working on.

Nadine Vogel: Yeah with housing too. Norma, you know if you think about it, and you know i'll just speak for myself, I won't speak for you two, but I am not getting any younger.

Norma: Exactly.

Norma: We are all going to be seniors at some point.

Nadine Vogel: The population is aging.

Norma. Absolutely.

Nadine Vogel: I'm amazed when you bring up about accessibility right it's not necessarily just for someone who has a disability today.

Norma. Exactly.

Nadine Vogel: Or was born with.  It could be someone that has an age related or develops age related disability later in life, you know i'm amazed i'll just share, you know when I go to a hotel I travel a lot for business.

Nadine Vogel: And when I go to a hotel i'm amazed when they don't have the magnification mirrors right i'm like I can't see anything I can't lean over I can't see like something even as simple as that.

Nadine Vogel: Right and.

Nadine Vogel: Obviously, many others that I do think that this accessibility issue is so critical now i'm curious, how are the developers responding.

Norma: Right.

Shelly Simmons: We've actually, had a few developers that are very receptive there is one particular group L-D, as in dog D, G as in George was actually has various properties around our state.

Shelly Simmons: They reached out to us and, at the time, my housing coordinator and I we went to the property and was able to tour it and offer suggestions on more accessibility and they were very open to that in fact.

Shelly Simmons: I will be meeting with them on this Friday, they have a new property just outside.

Shelly Simmons: Our metro area well it's in the metro area, but just outside the city and it's in development and they've taken a lot of our suggestions into play, and also we're going to be meeting with.

Shelly Simmons: county housing authority Dekalb county housing authority to talk about waivers and or vouchers I should say.

Shelly Simmons: For individuals with disabilities, and getting together a waiting list for this affordable, accessible housing. So, they've been very receptive, then I think I may bring in a couple other people other developers to this meeting, in hopes of really seeing the need and again, as you were saying.

Shelly Simmons: Our people our aging, and I want to be able to age in place, and all that should be done in safe areas and.

Shelly Simmons: When developments that are new and clean are tearing one down and that's what that's what the narrative that we're. Trying to change. 

Nadine Vogel:  and you know for norma for you, for me, you know we're moms have adult daughters with disabilities and you know we would want to know that our daughters potentially could could live in these places.

Nadine Vogel: And I think it's an issue of of avoiding segregation as well, right, that you know it doesn't have to be and we don't want it to be a development of just people with disabilities.

 

 

Nadine Vogel: You want it, norma, I mean you want an integrated right.

Norma: absolutely.

Shelly Simmons: Absolutely 

Shelly Simmons: Absolutely and I think that's, the only way that we can.

Shelly Simmons: continue to learn from another one.

Shelly Simmons: learn from each other, continue to always learn and not completely lose our compassion for one another and that's the only way that's going to happen is to be integrated into the Community and.

Shelly Simmons: And just realize when people say Oh, you know, maybe I get around a little bit differently, but you know my desires and needs are exactly what yours are so yeah full integration absolutely.

Nadine Vogel: And it was about transportation right, because one of the challenges for people, especially with physical disabilities right they you know they want to.

Nadine Vogel: live in their own home and live in a nice new development, but we do find as new developments crop up, especially as we get further and further outside a metro area in particular, you know doesn't matter where we are in the country transportation. is difficult to access.

Norma:  yes, it's a real issue.

Shelly Simmons: Absolutely.

Nadine Vogel: So, is that part of this discussion that you take on.

Shelly Simmons: Absolutely in fact we've been able to work with.

Shelly Simmons: What they call A-R-C the Atlanta regional Commission, I have a really good mobility coordinator.

Shelly Simmons: And she pretty much covers everything transit mobility buttons on the plane a walkable sidewalks anything of that nature and, as you mentioned once we come outside the metro area there's very few options and so we're working.

Shelly Simmons: With the various counties trying to get pilot programs up or micro.

Shelly Simmons: Excuse me on demand transportation pretty much when you can you know make that call and be able to set up transportation within a couple hours.

Nadine Vogel: I mean, I remember I lived in Los Angeles, many years ago and and.

Nadine Vogel: They were very forward thinking for Independent Living centers and things at that time and i'm going back now like 30 years ago 25 years ago.

Nadine Vogel: And I remember, there was so successful, but then the transportation issue, because even even in the metro you know LA, especially in those days, there was no public transportation line at all and.

Shelly Simmons: LA is my home.

Nadine Vogel: Well, okay, we can have a conversation about that.

Nadine Vogel: So if you, you know just we only have literally like three minutes left four minutes left um but you know just looking forward.

Nadine Vogel: Next, you know one year three year what, what are the one or two things that really jumped out at you that that you need to be focused on because of the barriers either either, because the barriers that are out there, because the opportunities that you see.

Shelly Simmons: And unfortunately they just never seem to change, you know housing is still a big thing we actually have a program.

Shelly Simmons: With acronym of H-A-T, and it's Home Accessible.

Shelly Simmons: yeah Home Accessible Program and basically we received funding from our department of Community affairs to help.

Shelly Simmons: With accessibility issues for individuals with disabilities and we make it very simple for people to qualify for home modifications, whether that is a new bathroom what the role is shower, winding doors opening up.

Shelly Simmons: modular ramps, and so we.

Shelly Simmons: were doing very, very well we've had a couple of hundred thousand dollars.

Shelly Simmons: But that has drop down to one hundred that was another thing that we were trying to educate an advocate more for because we have over 700 individuals waiting for home modifications.

Shelly Simmons: That simply cannot afford it so bad hundred thousand dollars doesn't go very far.

Shelly Simmons: Employment is a big issue for us as well.

Shelly Simmons: Especially by individuals who may participate in some of our waiver progreams you know their caps and such poverty levels that.

Shelly Simmons: You know, it almost doesn't make sense to go to work for people disabilities, want to work, but if they go to work and earn too much money then they're cut-off of that waiver so that's policy that we're trying to change.

Nadine Vogel: i'd like to lead that change.

Shelly Simmons: And I think a lot of things.

Shelly Simmons: You know we would like to see as well we're trying to model some other states like Washington State Maryland I think Arkansas might have a good Program.

Shelly Simmons: And somewhere in trying to do some of those things so it's always something about housing transportation i'm hoping that some of these micro transit pilots will be up and running.

Shelly Simmons: and

Shelly Simmons: county officials and state officials will see actually how you can add not only for people disabilities or people who are aging, but just for the Community as a whole to be able to access the resources within their own community so.

Shelly Simmons: i'm always something to do.

Nadine Vogel: always something to do so, we have about one minute left norma any final question or comment you'd like to address.

Norma: No, I just didn't have I had no idea of the extent of what you guys did that was really very cool and to learn about, and you know i'm looking forward to you know possibly checking out some of those programs for those senior citizens like myself.

Shelly Simmons: Absolutely, you reach out to us anytime.

Shelly Simmons: We're the best kept secret.

Nadine Vogel: There you go let's change that right.

Nadine Vogel: Now Shelly someone wants to reach you guys, how do we do it.

Shelly Simmons: Well, you can just visit us on our website at S-I-L-C-G-A.ORG or look up the independent living Council of Georgia, you can call us at 770-270-6860 and you'll be able to reach us at any time.

Nadine Vogel: And if someone is what if our listeners say Okay, I want to reach you guys, but I'm in Florida, would it be S-I-L-C-F-L.ORG.

Shelly Simmons: that's correct.

Nadine Vogel: Okay yeah I figured that out.

Nadine Vogel: For listeners depending what state you're in that's the formula to follow, I do hope that you will reach out to one of these agencies in your state, because it sounds like.

Nadine Vogel: there's some amazing amazing services that you all, provide that like you said you're the best kept secret and we gotta change that.

Nadine Vogel: So, shelly thank you so much for.

Nadine Vogel: joining us.

Shelly Simmons: Thank you ladies.

Nadine Vogel: Norma Thank you, as always.

Norma: Thank you guys look forward to the next one.

Nadine Vogel: See you next time on disabled lives matter bye bye.

Norma: bye bye everyone.

Shelly Simmons: Bye bye.

Closing comment:  [Music playing in background.] Thank you for listening to this week's episode of disabled lives matter. We look forward to seeing you next Thursday.  Have a great week!

Disclaimer: The views, information, or opinions expressed during the Disabled Lives Matter podcast series are solely those of the individuals involved and do not necessarily represent those of Springboard Global Enterprises, Springboard Productions, and its employees, contractors, subsidiaries, and affiliates.  The developers of the Disabled Lives Matter podcast are not responsible and do not verify for accuracy any of the information contained in the podcast series available for listening on the Podbean hosting site and/or any other associated hosting entity. The Primary purpose of this series is to educate and inform, and does not constitute disability, medical and/or other professional advice, and/or service(s). This podcast is available for private, non-commercial use only. Advertising incorporated into, in association with, or targeted toward the content of this podcast, without the express approval and knowledge of the Disabled Lives Matter's site developers is forbidden. You may not edit, modify, or redistribute this podcast.  The developers of the Disabled Lives Matter site assume no liability for any activities in connection with this podcast or for use of this podcast in connection with any other Website, Computer, and/or listening device.

S2-Ep12_DJ_Hear_No_Evil

S2-Ep12_DJ_Hear_No_Evil

April 15, 2022

Season 02, Episode 12
Co-Hosts: Nadine Vogel & Norma Stanley
Guest: DJ Hear No Evil

Intro: [Music playing in background] Disabled Lives Matter... here we go!

Voiceover: Hello and welcome to this week's episode of the disabled lives matter podcast. Let's welcome co-hosts Nadine Vogel and Norma Stanley.

Nadine Vogel: Hello everyone and welcome to tonight's episode of disabled lives matter. Yes, this is a podcast but it's more than a podcast You all know the answer it's a movement, and I am joined tonight by my fabulous co-host Norma Stanley hey Norma.

Norma: hey how is everybody doing today.

Nadine Vogel: Good i'm doing really great knowing who we are interviewing tonight, DJ Hear No Evil.  Well I just love the name just to. start.

Nadine Vogel: So Norma why don't you take us away.

Norma: Well I’m excited that we do have Mr. Anton DJ Hear No Evil Abraham, also known as the Silent Assassin, which we got to know what that came from.

Norma: He is a deaf DJ, who is here to breakdown some barriers and take the music industry by storm and I am loving every moment of that so I can’t wait for you to share what your life story is all about, thank you for being on Disabled Lives Matter today.

DJ Hear No Evil: yeah, thank you for having me. I am pleased that you guys invited me to tell.

DJ Hear No Evil: my story.

Norma: Absolutely absolutely well you know in reading your bio I have to say that we have something in common.

Norma: We’re both from Mount Vernon New York.

Norma: I grew up in Mount Vernon too. I actually moved there when I was 16 so I lived on North Lincoln Avenue I don't know if you know what that is.

DJ Hear No Evil: yeah I know. Yeah.

DJ Hear No Evil: yeah that’s where I lived most of my life in Westchester county.

Norma: Yes, yes, yes.

Norma: And you know they refer to Mount Vernon as Money Earnin’ Mount Vernon because so many celebrities have come out of Mount Vernon and you know people like Denzel Washington Sidney Poitier used to live there Ruby Dee live there.

Norma: And Heavy D. the rapper.

Norma: grew up there, my sister actually went to school with him so many, many um what’s his name, Al B. Sure came from Mount Vernon.

Norma: Yes, yes.

Norma: So I wanted to be one of those people one day, but nobody knows who I am but.

Norma: I love the idea that grew up in Mount Vernon with all those money earning people.

DJ Hear No Evil: That’s right. We have to represent our hometown you know.

Norma: You Mary J Blige is not from Mount Vernon, but she was from Yonkers.

Norma: It’s still Westchester county.

DJ Hear No Evil: yeah yeah, you can say that.

Nadine Vogel: Pressure, a lot of pressure on you.

Nadine Vogel: Just saying.

Norma: It’s a lot.  Well, you know I’m so excited to learn about your story you.

Norma: have done a lot in your career and in starting your brand as DJ Hear No Evil, first of all, how did you come across the name and how did you even get started in the DJ space.

DJ Hear No Evil: Okay, so DJ Hear No Evil was given by my fraternity, Alpha Phi Alpha

DJ Hear No Evil: Fraternity incorporated, which I pledged during college.

DJ Hear No Evil: So they gave me the name Hear No Evil.

DJ Hear No Evil: So I took that name, Hear No Evil as it represents who I am, i'm hard of hearing myself even though I could say I’m deaf. 

DJ Hear No Evil: I am hard of hearing in a deaf world and hearing world which I am in both worlds. So.

DJ Hear No Evil: I represent both. The old DJ name was DJ Ant, A-TON-Ant,  and my father was like what are you going to do with that name.

DJ Hear No Evil: I like that name, but that’s my government name, and I don’t want to use my government name.

DJ Hear No Evil: So as it, as time goes on, it was given to me by my fraternity, it represents who I am.

Norma: awesome.

Norma: awesome and so tell us you know.

Norma: Since you started this game, first of all, how did you get into the DJ space.

Norma: How did that begin.

DJ Hear No Evil: Oh.

DJ Hear No Evil: I started picking up the DJ-ing.

DJ Hear No Evil: At the age of thirteen.

DJ Hear No Evil: Because my father was a DJ himself.

DJ Hear No Evil: He was a DJ, he was a basketball player, he did a lot of stuff so I got into the DJ game because my dad would DJ events like a club, bar so forth, so I had to go with him to see what he does.

Norma: Okay.

DJ Hear No Evil: Or how he rocked the party, how he was meeting people, you know how did he was able to get more gigs.  In the local area and also outside Mount Vernon.

DJ Hear No Evil: You know, like in different states, so I’ve tried to pick it up from there since the age of thirteen so as time went on I practiced and started to have my own parties, and then had my own parties in college.

DJ Hear No Evil: My first freshman year. Yeah, it was my freshman year.

DJ Hear No Evil: Where I threw my own party at someone at the apartment, it was late, you know. 

DJ Hear No Evil: and the cops had come. 

DJ Hear No Evil: I’m sure you know at a party. 

DJ Hear No Evil: You know how that goes.

DJ Hear No Evil: So yeah that’s how I picked it up from my father.

Norma: Awesome. So it's a family business in a way.

DJ Hear No Evil: Yeah, basically.

Norma: That’s really cool and so, you said that your bio talks about you, using your hands to express yourself how do you say how does that work, because DJ-ing is an art.

DJ Hear No Evil: Um yes. I mean the movement is art.

DJ Hear No Evil: It’s a form of expression the way you can express yourself.

DJ Hear No Evil: It’s about how you rap, think about the night.

DJ Hear No Evil: the background or, whatever the case, might be, so that same concept, I let my hands speak.

DJ Hear No Evil: Because I don’t always speak on the microphone, I use my hands. So that tells the story.

Norma: Okay. Okay.

Norma: That's pretty cool so is that particular genre of music that gets you more excited than other types of music or is you just like whatever is out there.

DJ Hear No Evil: Well, I’m more into like hip hop.

DJ Hear No Evil: Yeah I pick up on the music of my family background my mother is Jamaican, and my father is Dominican.

DJ Hear No Evil: We do have some Hispanic family. some hip hop family and some you know, Jamaican family so I started picking up the different music and genres, I have to play different music and genres, because we need to be diversified.

DJ Hear No Evil: Like I mean if we go to a party, and nothing against, but if someone were to hire you to do a Bar Mitzvah.

DJ Hear No Evil: Nobody’s doing hip hop too much, but mix the music with pop music or rock-n-roll. So you have to have that in the folder.

DJ Hear No Evil: Basically what I’m trying to say is that we have to be ready whatever the matter. Yeah.

Norma: awesome, awesome.

Nadine Vogel: I have a question um my understanding is that you have won some DJ battles, I think, actually you've won two of them right, I think you the first Black Deaf hard of hearing DJ to win these battles which.

Nadine Vogel: sounds amazing.

Nadine Vogel: Maybe you could tell us what is a DJ battle.

DJ Hear No Evil: Okay, so.

DJ Hear No Evil: Those who are diversified battle about it. Basically what I did was get another DJ, with a regular turntable like this.

DJ Hear No Evil: Yeah I’m sure you’ve seen some movie called Juice.

DJ Hear No Evil: About a DJ battle, where they go back and forth.

DJ Hear No Evil: With the tricks.

DJ Hear No Evil: You know with the name calling or whatever is done going back and forth.

DJ Hear No Evil: Same concept.

DJ Hear No Evil: Same concept, so I battle against so my both battles were with about 20 DJs.

DJ Hear No Evil: 20 DJs, so I mean look at look it was pressure yes, but everyone knew I was nervous, but at the same time I still have the confidence.

DJ Hear No Evil: I had the confidence and was going on, and then you know like the rocket you know of 20 DJs, you know 10-9-8 whatever the bracket set and it came to  the final.

DJ Hear No Evil: Later to find out that I couldn’t believe I made it to the final.

DJ Hear No Evil: I didn’t think, I didn’t think I was going to win.

DJ Hear No Evil: Because I wasn’t sure of myself. So time goes on.

DJ Hear No Evil: I went to work in.

DJ Hear No Evil: Brooklyn.

DJ Hear No Evil: Which is in New York City.

Nadine Vogel: Yes. Brooklyn.

DJ Hear No Evil: I had to battle against a DJ from North Carolina.

Norma: Okay.

DJ Hear No Evil: So.

DJ Hear No Evil: He had made it to the final to battle against me. So I said okay.  He’s from North Carolina and I’m from New York City.

DJ Hear No Evil: So I have to represent. 

DJ Hear No Evil: New York City. And Mount Vernon I have to.  So I was going in, it was hard. It was hard..

DJ Hear No Evil: Until you get to the final round.

DJ Hear No Evil: And then, I didn’t even practice that part, I figured it would come out of my head, because I play the music in my head. You know what I’m going to do this, I’m going to play the music in my head. So I said, okay. and then I’ll put it in order with my remix and with some tricks.

DJ Hear No Evil: And got the people to go crazy because it just happens even though my mind was locked up.

DJ Hear No Evil: But I was going in and then you know from then I rocked. It was an amazing feeling, amazing feeling.

Norma: I’m sure.

DJ Hear No Evil: And then the second battle.

DJ Hear No Evil: It was in New York City as well.

DJ Hear No Evil:  but it was a good battle and captured the W.

DJ Hear No Evil: But then it was a little different because it was more party rocking. So it’s a little different. So same situations with the countdown.

DJ Hear No Evil: I wind up out of it. I did improve by the two DJ battles, but I did not win. I came in like in fourth place, and then in 10th place. Because I kept going.  I kept going until I won.

DJ Hear No Evil: Am I satisfied, no I am not satisfied, I want to win some more.

DJ Hear No Evil: So the reason I want to win some more is I want to try to break the barriers. So people like me the deaf and hard of hearing can do anything.  I’m not talking about to DJ, but in general.   

DJ Hear No Evil: Like to dance. A lawyer, business.

DJ Hear No Evil: You know TV acting, TV shows, movies, all that.  So we have to break the barriers so that people can use us and we can work together.

DJ Hear No Evil: If that makes sense to you.

Norma: Awesome, awesome, and so I would like to know.

Norma: See one of my questions is um. 

Norma: The obstacles obviously you had to deal with is that you are hard of hearing what kind of obstacles, did you have to overcome, to be able to get to where you are now you know after you won some of those battles.

Norma: You know now you’re a professional at it what kind of obstacles, did you meet as you were climbing the ladder.

DJ Hear No Evil: Well I would say the top two.

DJ Hear No Evil: One is communication. That’s number one, that’s very, I mean that’s where we had an issue with it, I mean it’s been going on for years. For years.

DJ Hear No Evil: And number two is my ear, so I don't hear everything so that’s why I have to use my eyes.

DJ Hear No Evil: So to communicate. So if I communicate with you I used them to read lips.  I can here too, but I can read lips. 

DJ Hear No Evil: So I can make sure it fits what I think is what you are saying. 

DJ Hear No Evil: So those are my top two I’m facing right now.

DJ Hear No Evil: So people are thinking, oh he’s deaf so put him to the side.

DJ Hear No Evil: No I’m ready to work.

DJ Hear No Evil: You know because I mean I have, I have been I’ve the mindset I'm intelligent, so use me. because I can make you money you can make me money so let’s do it.

DJ Hear No Evil: So that’s one of my top two strategies I’m breaking through right now.

Nadine Vogel: Yeah it is it you know it's in many ways it's not your barrier right it's the barrier of others, there are barriers of thought they can't get past because they know someone has a disability right they make X assumptions and they just can't get past that but, but you doing what you do.

Nadine Vogel: You force them to get past it.

Nadine Vogel: You force them to see beyond disability and I think that's what everybody needs.

DJ Hear No Evil: Right. Most definitely most definitely because we.

DJ Hear No Evil: all have different strategies, so we have to break the barrier, I mean it’s 2022 it’s not like it’s 1960s where Martin Luther King has to fight for our rights, now people want to put their news.

DJ Hear No Evil: in the digital age, because the news and social media is powerful. So work with us, we know what you are doing.  

DJ Hear No Evil: You know we’re not that dumb. You know.

Norma: Awesome so tell us. Who are.

Norma: Some of your favorite artists that you like to play, because obviously you do world music.

Norma: Because like you say coming from the Caribbean and the Hispanic community and the Latino community and so there's a lot of different types of music that you probably play, but who are some of your artists that you kind of prefer to to play when you're doing your DJ-ing.

DJ Hear No Evil: So.

DJ Hear No Evil: The DJs that impact.

DJ Hear No Evil: Making the difference, I would say, it’s hard to pick on, one of the top DJs, I would say is DJ Scratch. He’s from New York City. He changed the game and he kept the turntablism running.

DJ Hear No Evil: He DJs for the big artists like Busta Rhymes, LL Cool J, so forth, so he teaches where turntables and music actually are coming from.

DJ Hear No Evil: That will make me go more deep about the music. That is what my father taught me which is cool, but he did say that we have to understand.

DJ Hear No Evil: where the music comes from where it originates. So I, no doubt, started to understand more about that from DJ Scratch

DJ Hear No Evil: Now other artists like rappers, singers.

DJ Hear No Evil: You know, I have to say.

DJ Hear No Evil: Jay-z. Jay-z is a rapper.  He tells a story.

DJ Hear No Evil: He had more than 1 billion, he has a clothes business.

DJ Hear No Evil: he is a part owner

DJ Hear No Evil:: of Brooklyn Nets team.

Norma: Oh wow.

DJ Hear No Evil: So what I’m trying to say is. The sky's the limit.

DJ Hear No Evil: So there’s more than one thing you can do, because you can’t just focus on one thing. Because we have to have different avenues where you can add to your resume.

DJ Hear No Evil: So people can respect you for more than what you're doing.

Nadine Vogel: I have to step in, because we must go to commercial break I’m just summarize, but the conversation I’m not even paying attention to the time.

Nadine Vogel: We need to go to a quick commercial break so for our listeners stay tuned Norma and I and our DJ Hear No Evil we'll be right back.

Voiceover:  And now it's time for a commercial break.

[COMMERCIAL]
Have you attended a springboard Consulting event? Well, you should, we have the best events and our 2022 events are just under way. Firstly is the BRG Summit happening on Tuesday, April 26th, and then following that is Disability Matters. North America Conference and Awards that's happening Wednesday and Thursday, April 27 and 28. Both events are being delivered by a live stream. If interested in attending, please visit www.consultspringboard.com for more information.

Voiceover:  And now back to our show.

Nadine Vogel: Hello to our listeners, this is Nadine Vogel I am joined by Norma Stanley we are the Co-hosts of Disabled Lives Matter and if you've been listening so far to our interview with DJ Hear No Evil, you know Disabled Lives do Matter and why so Norma I’m going to turn it back over to you.

Norma: Well yeah I mean there's just so many questions I actually want to ask but, you know.

Norma: In history, I understand there are some people in history that you really admire that you would like to you know share with people as to why you admire those people can you share a couple people in history that you admire and why that is.

DJ Hear No Evil: Oh the few people I look up to is.

DJ Hear No Evil: DJ Scratch.

DJ Hear No Evil: And my, my mother, my father, he was in the music game.

DJ Hear No Evil: All those people inspired me to work harder.

DJ Hear No Evil: I can’t give up.

DJ Hear No Evil: So because what I am really trying to say is that I cannot make any excuses. 

Right.

DJ Hear No Evil: If it’s there, I can get there, I just have to overcome my obstacles.

DJ Hear No Evil: So that’s how they motivated me and when I stay motivated for myself to get to where I need to be at.

DJ Hear No Evil: I’m talking about my life, my health, my mindset.

DJ Hear No Evil: The whole, everything.

Norma: Right and.

Norma: As your you know progressing in your your career and making such great name and reputation for yourself how are you being received from the community in general, I see you have a really big social media following How do people receive your work obviously you.

Norma: love it, but I would like to know what you think.

Norma: How do they respond to you when you do your gigs.

DJ Hear No Evil: So what I do is, I started with social media, I keep postings of my work.

DJ Hear No Evil: Not my work, but to make people aware of 

DJ Hear No Evil: deaf history, and I use sign-language. 

DJ Hear No Evil: and motivate everybody.

DJ Hear No Evil: by talking about the kids and.

DJ Hear No Evil: looking through their eyes and adding a hashtag, got my fraternity brothers, because they are all over the country. 

DJ Hear No Evil: And all over the world.

DJ Hear No Evil: Not just the United States I’m talking about, all over.

DJ Hear No Evil:: And in the deaf world too so that's how I got a lot of people come to check my work.  Not just myself, I have them look at other deaf composers, so I get their name out there as well.

DJ Hear No Evil: You know, so they'll make it and I’m not trying to be selfish, but at the same time, I have to show my work too.

DJ Hear No Evil: Cause I'm trying I'm trying to make it too.

Norma: That’s right, that’s right.  I’m not mad at’cha.  That’s what you gotta do.

Nadine Vogel: You know.

Nadine Vogel: You know it's interesting a comment you made early on keeps kind of swirling in my head a little bit, which is about you know, using your hands to express.

Nadine Vogel: And I keep coming back to this concept, because obviously for someone who is deaf you do use your hands to express, but I don't think that people equate it and realize that for a DJ.

Nadine Vogel: Right if not for your hands, how will you, you know express this and I just this takes me to a whole other discussion about you know, have you ever.

Nadine Vogel: Oh, my gosh I don't even want to say taught a class published a book or wrote an article I don't know I just feel like there's something here.

Nadine Vogel: To a teachable moment for people to really understand the concept of expression and expressing with your hands beyond just what people will think of in terms of sign language so I'm sorry to derail a little bit Norma but it's like it just.

Nadine Vogel: Keeps coming back to me, as this is really important.

Norma: I agree.

DJ Hear No Evil: Yeah, yeah I definitely I definitely agree with that because everybody has a different way to show and  express their story. And not just to move their hands.

DJ Hear No Evil: There is one female who is blind. She’s from Mount Vernon too, but she’s blind. So she can tell her story.

DJ Hear No Evil: You know, a basketball player I think he didn’t graduate from high school yet , but he is hearing, but he’s playing with one arm.

DJ Hear No Evil: I can’t remember his exact name, but.

DJ Hear No Evil: He got it he got it, excited because everyone got it.

DJ Hear No Evil: So he plays with one arm and that’s amazing.

DJ Hear No Evil: You know what I mean, so everybody has a different kind of niche.

DJ Hear No Evil: That can show their talents.

DJ Hear No Evil: There’s no excuses for not doing.

DJ Hear No Evil:: Oh, I can’t do it, but no, we have the ability to do it.

Nadine Vogel: Right, right.  Absolutely I just said that's that's just so interesting Norma you know I feel like it's something we need to explore even further.

Nadine Vogel: Another time but I, this is an important concept.

Norma: Absolutely, the DJ industry, the DJ-ing industry is huge, I mean Beyonce sister Solange is a DJ was a DJ. Khalid there so many really, really.

Norma: Big name, DJs out there, that I didn't even realize there was so many and they do all these international type of gigs is that something that you aspire to be a part of that group.

DJ Hear No Evil: Oh yeah.

DJ Hear No Evil: every night.

DJ Hear No Evil: I mean, that’s one of my biggest goals. you know I mean my goal is to be one of the top DJ producer

DJ Hear No Evil: In the world. So like, it will be amazing for me to do it working up to get there, I mean, even though I’m well known, but at my status, I am still working to get there, but I have to find a way to get to where I need to be at. Right now, it’s all about who you know nowadays

DJ Hear No Evil: I when I say about who you know it’s about connecting, networking like you have to go out to talk to people and then meeting people letting them know about who you are and you never know who might get back to you.

DJ Hear No Evil: It could be one out of one million people walking to you and then they’re calling you, hey youneed to come to the big event.

DJ Hear No Evil: Oh, that would be amazing. Then going over there, and it starts there, and then you work your way up.

Nadine Vogel: So when you.

Nadine Vogel: So when you perform at the Grammy awards Okay, you know, Norma, you and I can say.

Nadine Vogel: Hey the Disabled Lives Matter podcast to the Grammys.

Nadine Vogel: Ha, ha, ha. One-stop shop.

Norma: Absolutely, absolutely. That is so cool.  Now you teach you teach sign language and have done that around the world really in different countries and in different places in the US to teach with the American sign language workshop and how does that work and do you still do it.

DJ Hear No Evil: So I’m not

DJ Hear No Evil: teaching A-S-L.

DJ Hear No Evil: Yet.  In the future I wouldn’t mind.

DJ Hear No Evil: What I do is I do motivational speaking so I talk to people about my life.

DJ Hear No Evil: I was teaching, but I was teaching about deaf history, so that is the difference.

DJ Hear No Evil: So I’m teaching them more about finger spinning, how to use a turntable along with sign-language, all of that. So that’s the difference.

DJ Hear No Evil: But would I like to teach people to learn A-S-L, absolutely. It would be nice to communicate with people in A-S-L so we can, so the reason I would want to teach them is so that we can combine into one world instead of separate worlds. Deaf World, Hearing world, no.  The need to be into one world.  That’s how we are going to improve our communications.

DJ Hear No Evil: So yeah I wouldn't mind a few people who want to know more about American Sign Language.

Nadine Vogel: So you know Norma, I'm thinking we should introduce him to the folks at Sign1News.

Norma: Absolutely, absolutely.

Nadine Vogel: They can do a story on him.

Norma: Absolutely, I will make sure that Karen knows about you and um.

Norma: I am thinking that would be something that can.

Norma: Definitely happen. Absolutely.

Nadine Vogel: Are you familiar I don't know if you're familiar with Sign1News, but it's a news station and front of camera behind camera everyone is deaf and it's all you know, like CNN type news and and they have amazing stories and you should be on there.

Nadine Vogel: We’re going to help you get to the Grammys.

DJ Hear No Evil: I mean, I don’t mind, I’m down for that. You know what I mean, I'm open minded like that, you know making an impact, you know.

Nadine Vogel: So I'm curious if, if, two things I have one question first, which is, if you could have a, if you could meet your younger self today if you got introduced to your 10 year old self.

Nadine Vogel: What would you tell him.

DJ Hear No Evil: wow.

DJ Hear No Evil: that’s a good question.

DJ Hear No Evil: I mean a very good question.

DJ Hear No Evil: I mean, if I meet my 10 year old myself, I’m I can’t tell myself everything because that would mess up the future.  But what I can tell is that he needs to stay focused. 

DJ Hear No Evil: Focused and work hard.

DJ Hear No Evil: Don’t get distracted.

DJ Hear No Evil: because when you get distracted you lose the passion.

DJ Hear No Evil: You’ll lose the focus for wherever we need to be at. I mean because I was a kid, I could have gotten into the bad things I mean I almost did I mean good thing is my grandfather talked to me and stopped me and said okay focus you know what I mean.

DJ Hear No Evil: So too will tell myself work hard.

DJ Hear No Evil: Stay focused. You know.

DJ Hear No Evil: Meet with the right people.

DJ Hear No Evil: Because getting mixed up with the wrong crowd will mess up your life and mess up your mindset. And everything that you dream about.

DJ Hear No Evil: That’s something I would tell my 10 year old self. Just like that.

Nadine Vogel: And I, and I guess your advice would be probably similar for an up and coming a younger DJ that you know someone that aspires to be you and to do what you're doing I presumed then the advice would be pretty much the same.

DJ Hear No Evil: Yeah, yeah, yeah most definitely. Most definitely.  I mean.

DJ Hear No Evil: It’s amazing because my life is very interesting, you know, even though after I graduate from college my life is interesting as a whole.

DJ Hear No Evil: So I’m able to do this, and I’m able to do that. Oh wow, so I thought about

DJ Hear No Evil: learning new experiences.

DJ Hear No Evil: And how you get better from that.

Norma: Absolutely.  So what did you major in in college What was your major.

DJ Hear No Evil: I graduated with a media-marketing and accounting I have two majors, I graduated with bachelor degrees, I have master certifications 

DJ Hear No Evil: So I have a bachelors and masters.

DJ Hear No Evil: yeah. Yeah.

Nadine Vogel: That's an interesting combination marketing and accounting.

Nadine Vogel: Usually the people in marketing was nothing to do with the numbers.

Nadine Vogel: And the people doing the numbers want nothing to do with marketing.

Norma: Exactly. That’s interesting.  I, I am one of those people who want nothing to do with the numbers.

Nadine Vogel: Right, right, me too, I know.

Nadine Vogel: But you know I it's an interesting combination, because, in part, that really helps you beyond beyond DJ running the business of DJ-ing.

Nadine Vogel: That really gives you some great background to be able to do that as well.

Nadine Vogel: Right. Yeah because.

DJ Hear No Evil: I would definitely like to be a hip hop mogul like Jay-z or Diddy, or Russell Simons,.

DJ Hear No Evil: So I can bring my deaf community out there.

DJ Hear No Evil: And help them to explain how to do it right. And then they can go ahead and do their own thing.

DJ Hear No Evil: While I’m pursuing my own thing as well.

Nadine Vogel: Right, right.

Nadine Vogel: Awesome, awesome, very cool.

Nadine Vogel: Wow Norma, This is like amazing.

Norma: Yeah I really enjoyed learning more about you DJ. What part of Brooklyn are you in. Or do you still live in Brooklyn.

DJ Hear No Evil: I live in Mount Vernon, New Rochelle.

DJ Hear No Evil: But I travel a lot.

DJ Hear No Evil: I tend to go D.C., Washington D.C, and then Atlanta.

DJ Hear No Evil: Texas, Florida, I travel a lot. Depends what kind of event I’m doing.

DJ Hear No Evil: BecauseI’m unable to say no that’s too much because I’d rather stay outside the comfort zone.

DJ Hear No Evil: You gotta be comfortable with being uncomfortable. 

Norma: that's right.

DJ Hear No Evil: So I’d rather strive a lot, and go outside.

DJ Hear No Evil: get some experience also expanding my brand.

DJ Hear No Evil: I just got back from Jamaica. Two months, what’s today, this is.

DJ Hear No Evil: March.

DJ Hear No Evil: I got back from Jamaica about. Four or five months ago.

Nadine Vogel: Ah.

DJ Hear No Evil: So I was DJ-ing in Jamaica, it was a nice experience.

Norma: Nice.

DJ Hear No Evil: So I DJ’ed there, I wouldn’t mind to DJ in.

DJ Hear No Evil: Europe.

DJ Hear No Evil: That’s where the big money comes in.

Norma: Yeah.

Nadine Vogel: Well okay. We’re going to have to keep talking because you know my company works with you know companies around disability and we have events in different parts of the world, and when we get finally get rid of Covid, hopefully, and we can go back to our in person events we just may be reaching out to you.

DJ Hear No Evil: So you have my email. Instagram or whatever.

DJ Hear No Evil: So you can reach out to me.

Nadine Vogel: Well, you know what let's let's do it let's close on that note, if someone is listening to this and it looking to book an amazing DJ how do they get in touch with you.

DJ Hear No Evil: So.

DJ Hear No Evil: If you want to reach out to me to DJ or as a motivational speaker, you can reach out to me on my Instagram or by email. So my Instagram is @djhearnoevil one more time, @djhearnoevil

DJ Hear No Evil: And my email is bookingdjhne@gmail.com.

Nadine Vogel: Okay.

DJ Hear No Evil: One more time bookingdjhne@gmail.com.

Norma: Okay, great.

Nadine Vogel: For all our listeners you heard it here.

Nadine Vogel: If you need a DJ, this is the guy to call or to email or however you want to get in touch with him.  Norma, thank you. Wasn’t this amazing.

Norma: Yeah, thank you so much, I really learned so much about the craft.

Norma: And looking forward to seeing you again very soon.

Nadine Vogel: Absolutely so to our listeners, I know you enjoyed this is much as we did, and we look forward to seeing you and speaking with you on another episode on our next episode.

Nadine Vogel: of Disabled Lives Matter more than a podcast, it is a movement and Norma, thank you so much, so we have Norma Stanley and Nadine Vogel till next time bye everybody.

DJ Hear No Evil: Thank you for having me.

Closing comment:  [Music playing in background.] Thank you for listening to this week's episode of disabled lives matter. We look forward to seeing you next Thursday.  Have a great week!

Disclaimer: The views, information, or opinions expressed during the Disabled Lives Matter podcast series are solely those of the individuals involved and do not necessarily represent those of Springboard Global Enterprises, Springboard Productions, and its employees, contractors, subsidiaries, and affiliates.  The developers of the Disabled Lives Matter podcast are not responsible and do not verify for accuracy any of the information contained in the podcast series available for listening on the Podbean hosting site and/or any other associated hosting entity. The Primary purpose of this series is to educate and inform, and does not constitute disability, medical and/or other professional advice, and/or service(s). This podcast is available for private, non-commercial use only. Advertising incorporated into, in association with, or targeted toward the content of this podcast, without the express approval and knowledge of the Disabled Lives Matter's site developers is forbidden. You may not edit, modify, or redistribute this podcast.  The developers of the Disabled Lives Matter site assume no liability for any activities in connection with this podcast or for use of this podcast in connection with any other Website, Computer, and/or listening device.

 

 

S02-Ep11_Rick_Knight
S2-Ep10_Lesley_Hennen

S2-Ep10_Lesley_Hennen

March 25, 2022

Season 02, Episode 10
Co-Hosts: Nadine Vogel & Norma Stanley
Guest: Lesley Hennen

Intro: [Music playing in background] Disabled Lives Matter... here we go!

Voiceover: Hello and welcome to this week's episode of the disabled lives matter podcast. Let's welcome co-hosts Nadine Vogel and Norma Stanley.

Nadine Vogel: Hello Hello everyone, this is Nadine Vogel and joining me as my fabulous co host Norma Stanley.

Norma: Hello.

Nadine Vogel: We are here for another wonderful episode of disabled lives matter and they really do, by the way.

Nadine Vogel: And this is more than just a podcast this is, this is a movement and so we're so excited for all of you to join us to help us continue and grow that movement and especially so because we have a wonderful guest with us today that Norma I'm gonna let you introduce.

Norma: Well let's Lesley Hennen is an amazing young lady she is a writer, director, filmmaker, and you know she has done some amazing work in.

Norma: The field of entertainment, of course, and we are really excited to have you on the show you also.

Norma: do some work with entertainment and making sure people disabilities get the opportunities that they deserve do some work with RespectAbility I just want to thank you for taking time out to be a part of disabled lives matter today.

Lesley Hennen: yeah Thank you so much for having me i'm excited to chat.

Norma: Well, we are really interested in learning about the work that you do when it comes to entertainment and i'm what our.

Norma: First of all, what drove you to want to do the kind of work that you do someone who is an advocate and proponent of making sure people with disabilities get opportunities in the entertainment space.

Lesley Hennen: yeah so I mean I, like every kid in the 90s early 2000s grew up with TV I love TV.

Lesley Hennen: But I was born with a disability, I was born with club feet, and so I were like braces I used to use a walker i've also used a wheelchair.

Lesley Hennen: When I was very young, but I never really saw that represented on screen anywhere on TV.

Lesley Hennen: And anytime there was a disabled character, they were either you know, it was very like tragic or or there was, like the complete opposite where the character was like so positive had no problems and they were this like inspirational.

Lesley Hennen: You know, trying to inspire all of the non disabled characters around them and I watching that was like I'm neither of these things you know I just.

Lesley Hennen: I'm in between, and so I started writing you know just trying to write my own stories and write my experiences that were authentic to me, and what I you know experienced growing up and.

Lesley Hennen: As an adult as well, and so that was kind of how I got into writing and TV writing and then, as I learned more about the industry.

Lesley Hennen: And I realized like if I want to tell these stories and tell them the way I want to tell them like the industry has to change, as well, so that was.

Lesley Hennen: I actually found RespectAbility in 2020 when I went through our summer lab program as a writer, so we have a program that is for.

Lesley Hennen: Anyone with a disability that's working behind the camera and the entertainment industry so writers, directors, producers.

Lesley Hennen: everything that happens behind the camera so I went through that as a writer and just learned a lot more about.

Lesley Hennen: You know how the industry works and ways to advocate for myself as a disabled person and advocate for others and to sort of help that.

Lesley Hennen: Industry change, and so, then I started working on staff with RespectAbility.

Lesley Hennen: About a year ago, actually so yeah it's been really great kind of a full circle moment to kind of you know both do my own writing and then also help kind of advocate for the change for everyone so it'll be an industry that I want to work in.

Norma: awesome awesome well do you have any questions I have another one.

Lesley Hennen: Go fo it.

Norma: Well, I mean so I'm starting to see more representation of people with disabilities on television and films and things like that.

Norma: What do you think they are missing, because it's still not really represented, I mean it's still very few people who are a part of these opportunities, what is it that you would like to see more of.

Lesley Hennen: yeah I mean i'd love to see just more representation, overall I think that's, the main thing is like.

Lesley Hennen: There has been such a few representation so far that you know it feels.

Lesley Hennen: Like there's always still just feels like there's much missing like you said, so I think we really just need more of the nuance like more.

Lesley Hennen: Of like really specific stories because there's no disabled person is the same so that's what I really advocate for in my writing is telling like.

Lesley Hennen: Very specific stories, a lot of intersectionality like disability is an identity that can cut across all other underrepresented identities, as well, so intersectionality is super important to me.

Lesley Hennen: Also authentic casting like we really need there's so many disabled actors out there that are so super talented but, again, are like only considered for disabled roles, or you know, but we really need to start considering.

Lesley Hennen: actors for other roles as well, and just really also just more casual inclusion, I guess, it would be like you know there's no we don't need to know why the character is disabled like you're.

Lesley Hennen: Like a main character can have a disability, but it doesn't need to be the focus of the story, it can, but it doesn't have to be so, I think you know that's what i'd love to see is just more like casual inclusion.

Nadine Vogel: So I have a question about that So where does that start right, how do we get that, how do we get that to happen, because I can tell you, at least for Norma and I we've been it's been a long time.

Lesley Hennen: yeah I mean great question, I think it starts with just talking to the studios that's what a lot of what we do RespectAbility is like.

Lesley Hennen: Encouraging authentic and I don't think authentic casting but hiring disabled writers in the room, hiring disabled directors and disabled.

Lesley Hennen: Post production folks as well, so just really hiring more disabled people at all parts of the process and then also just hiring more.

Lesley Hennen: High Level disabled folks as well, so like disabled show runners who are really like changing things from the top down like I think that's really how it needs to happen.

Nadine Vogel: yeah.

Norma: Yeah. that's true and my brother was um was in the movie industry, many years ago and he's no longer with us, but he got a chance to be part of movies, like.

Norma: terminator and Star Wars and the distribution side, not in the film and the production side, but you know back then.

Norma: It wasn't even thought of, you know, to incorporate people with disabilities in any of the.

Norma: Aspects of filmmaking and television production and those kinds of things so i'm glad to see it happening, but you know the like you say it's just not enough.

Norma: Like you say, it should also be regular roles that people with disabilities get the opportunity to audition and get and that's happening enough 

Lesley Hennen: yeah.

Nadine Vogel: You know Lesley you also said something about intersectionality so at springboard we have a whole global practice around intersectionality with disability and that's a that's a really big deal for me because none of us are one thing.

Lesley Hennen: Right.

Nadine Vogel: But, for some reason, when it comes to disability people like to make that so one thing right like you can't be you know LGBTQ and disabled or black and disabled whatever it may be um I wonder if you have any thoughts on that.

Lesley Hennen: I know yeah I mean, I see that a lot too I don't know what it is why people are constantly you know, putting disability and its own separate box or just a lot of times it's not even.

Lesley Hennen: People will list other identities and not list disability, even though, like there will be disabled people in those groups that are listed it's like it's for some reasons it's never called out.

Lesley Hennen: I don't know what it is, I guess the stigma I guess is just around disability there's such a.

Lesley Hennen: systemic stigma that goes back to you know people not wanting to identify as being disabled or you know people are very afraid to say the word disability so that's another thing that.

Lesley Hennen: I like to advocate for and RespectAbility advocates for as well, as you know, disability is not a bad word.

Lesley Hennen: it's the you know the societal stigma about disability, that is bad so trying to say the word as often as possible and just you know get rid of that stigma, because it is a very.

Lesley Hennen: I find it a very empowering word, you know there's the Americans with Disabilities Act so it's not the differently abled Americans actually it's a disability so that's.

Lesley Hennen: I think it's just getting over that stigma and just saying the word disabled and disability and just trying to get it into the into the norm.

Nadine Vogel: Now i'm glad you said that.

Nadine Vogel: So norma and I have had these conversations you know in in corporate where were we work.

Nadine Vogel: differently abled is is you know the the term of choice, and you know I always say even if you look at parents and you know Norma and I are both.

Nadine Vogel: moms have adult daughters with disabilities, you know the term special needs right like no one likes that, but that is actually the lingo legal terminology within the school systems.

Nadine Vogel: And so I always say you know even parents that use the term special needs don't like differently abled like what does that mean aren't we all differently abled in some way.

Nadine Vogel: But I think it goes back to something, you said that there's a lack of comfort right with the word, so I always say say it loud say it proud, you have a capital D, you know.

Lesley Hennen: Yeah. Exactly.

Norma: absolutely.

Norma: And I think that's a conversation that really needs to be had at a larger level because so many people don't really understand that it's not a bad word and and that you know there's not a.

Norma: comfort level that word for some reason, and they feel they have to make it sound different.

Norma: little bit more acceptable.

Norma: And that's something I think that needs to be discussed on a broader level.

Nadine Vogel: yeah absolutely 

Lesley Hennen:  yeah absolutely.

Nadine Vogel: So i'm just curious, what is your being in entertainment and you know, like you said you know going to the studios and talking about hiring people with disabilities more.

Nadine Vogel: What is your involvement relative to you know, one of the things we hear a corporate as well we don't know where to find these people.

Nadine Vogel: right. they're hidden behind you know corners and rocks.

[laughter.]

Nadine Vogel: What are you all doing you know, in terms of getting with SAG screen actors Guild or the writers Guild to say hello they're here.

Lesley Hennen: yeah great question that yeah that was definitely something we heard a lot was like oh we'd love to hire a disabled writer, we just don't know any. or like a

Lesley Hennen: Disabled director, but we don't there aren't any we don't know any so we.

Lesley Hennen: That was originally why the summer lab was created in 2019 was sort of an answer so where we could just point people to and say like well here, here they are here's.

Lesley Hennen: we've had about 90 people go through the program now and we are gearing up we're going through applications now so there'll be.

Lesley Hennen: Two labs this summer actually so we'll have about 60 more folks going through the lab, which is very exciting but yeah so we're really just focusing on the pipelining programs, and not only just like.

Lesley Hennen: it's very much a two part thing where we're you know, creating a pipeline for disabled creatives but then also working with the people that are in hiring positions to make sure that.

Lesley Hennen: The disabled creatives that we're placing in jobs are going into an environment that is accessible to them and is going to be like a successful.

Lesley Hennen: positive environment for them and to help them get promoted, so I think that's a big part of what we do is because you know a lot of.

Lesley Hennen: oftentimes like the pipeline programs, you know they'll get even just like regular like industry.

Lesley Hennen: writers programs, a lot of times you'll get hired you know, on a show for one season, through this pipeline program but then like you don't necessarily get hired back.

Lesley Hennen: So a lot of the the lab is very much just like introducing folks to as many different people and hiring positions as possible all across the industry so every department.

Lesley Hennen: From development to writing to on site production and post and marketing and casting and everything, so I think we're just trying to go at it from as many angles, as possible and so working with both the disabled creatives and the people in hiring positions as well.

Nadine Vogel: yeah and I think I think norma you and I see that in corporate right if companies will hire entry level.

Nadine Vogel: And then the individuals with disabilities, although their performance manager, or is it been fabulous you know 10 years later there's still a entry level.

Nadine Vogel: or one of the things that springboard talks about often is this issue of organizational readiness right so so we bring the person in knowing that we don't have systems in place.

Nadine Vogel: To ensure to your point Lesley that they're going to be successful right we don't have a reasonable accommodations process or we don't whatever it may be right, so that that's also a challenge, and then they say Oh well.

Nadine Vogel: it's like a self fulfilling prophecy they'll say well Lesley see we told you, it wasn't. going to work.

Nadine Vogel: And you're like.[frustrated scream]

Lesley Hennen: I know it's so frustrating.

Nadine Vogel: right yes yeah, I can tell you been there done that.

Nadine Vogel: So we actually have to go on break.

Nadine Vogel: So let's just take a very short break, but for our listeners do not go anywhere, we are going to be back in just a minute with lots more questions and more conversation so stay tuned.

 

Voiceover:  And now it's time for a commercial break.

[COMMERCIAL]
Have you attended a springboard Consulting event? Well, you should, we have the best events and our 2022 events are just under way. Firstly is the Brg Summit happening on Tuesday, April 26th, and then following that is Disability Matters. North America Conference and Awards that's happening Wednesday and Thursday, April, 27 and 28. Both events are being delivered by a live stream. If interested in attending, please visit www.consultspringboard.com for more information.

Voiceover:  And now back to our show.

 

Nadine Vogel: Hello everyone and welcome back to today's episode of disabled lives matter and, yes, it really does and i'm going to turn it right back to Norma, because I want to get back to today's wonderful interview with Lesley Hennen, so Norma take it away.

Norma: Okay well Lesley I'm really curious to learn more about your your approach to the writing you you tend to take a comedic point of view, to the types of things that you do, why is that and and how was it working out for you in terms of the projects, you get to do.

Lesley Hennen: yeah great question i've always been a little bit of a comedian like even as a kid I was always kind of like the class clown and I think I don't know if it necessarily was because I was disabled I have heard, I there are studies, I don't know I can't quote them exactly.

Lesley Hennen: There is like.

Lesley Hennen: kids that grow up with disabilities will often sort of develop humor as like a distraction, maybe or something like that, so it is very likely that they will become comedians that I found interesting, and so I was like oh that was me.

Nadine Vogel: Someone just talked about that I think it was on the critics choice awards, I think I just just someone was just saying something about that.

Lesley Hennen: Oh, really.

Lesley Hennen: yeah I I found that very interesting was like yeah that makes a lot of sense but yes i've always been a little bit of a comedian but I I just find there's something you can say.

Lesley Hennen: Some things you can say with comedy that you.

Lesley Hennen: can't really say with other like for me it's like pointing out kind of the ridiculousness of like living as a disabled person in an inaccessible world like there are some things like you can only point out with comedy like I don't know how to quite describe that but.

Lesley Hennen: Just like calling out how ridiculous these like the things are that we live in, like.

Lesley Hennen: And like for there's one series that I I pitched and I want to like a pitching contest with and it's very much based on like.

Lesley Hennen: Larry david's curb your enthusiasm like that type of humor where it's like the it was if Larry David was me basically it was.

Lesley Hennen: Like a.

Lesley Hennen: Disabled woman with a disability that's like it's physical but it's not visible all the time, depending on what i'm wearing they were leg braces so.

Lesley Hennen: that's gotten me into some like interesting situations on like public transportation where if i'm sitting in the accessible seats and someone will ask me to move, and I have to say, like no.

Lesley Hennen: i'm disabled like I can sit here then just sort of like blowing up those moments into more of a comedic take on things that sort of like the humor I enjoy, I find it funny because it also kind of points out, like the ridiculousness of some of the the the. rules we have in our society.

Nadine Vogel: Oh no you're right, you know I can remember when my daughter was young, and we were taking her out of the car with an oxygen tank with suction machines all kinds of stuff and we'd be parking and accessible parking we get yelled at.

Lesley Hennen: yeah. 

Nadine Vogel: Right. I was like really.

Lesley Hennen:  All you can do is laugh.

Nadine Vogel: What part of all this paraphernalia do you not see. you know.

Nadine Vogel: I love that you're doing that I think it's great.

Norma: You know it's pretty much in the way the comedians like Richard Pryor and some of the other comedians they have to make light of discrimination and what black people have dealt with.

Norma: it's, the only way they know how to deal with it and also it helps people to understand and be educated as to what people are individuals themselves are experiencing so it's an important aspect of it did you happen to know josh blue.

Lesley Hennen: I have heard of him, but I don't know him yeah.

Norma: Okay yeah he's. we're trying to get him on the show too.

Norma: he's a comedian also he has cerebral palsy.

Lesley Hennen: yeah Oh yes, I think. I've seen him.

Norma: Yes, yes.

Norma: Yes, yes, so that's what he does, and he does a great job he's hilarious you know so.

Norma: don't even pay attention to the fact that he has a disability, just so funny yeah.

Lesley Hennen: yeah I think that's what you said to is it kind of forces people to think about things they hadn't thought about before, and that was another I was in like a writing class a satire writing class a few many years ago.

Lesley Hennen: And I wrote, something that was like based on some of those BuzzFeed articles that you see, like all so something all 90s kids will understand, and so I wrote something about like.

Lesley Hennen: Like toys that people like disabled kids probably couldn't use like things, but like I couldn't like we're not accessible to me.

Lesley Hennen: And I remember like bringing that into the Class three workshops and basically everyone was like wow I never thought of that before and so that was when I was like oh I.

Lesley Hennen: This is what I need to do that was like kind of a big.

Lesley Hennen: Aha moment for me.

Norma: Or that must have been pretty interesting what kind of toys with those.

Lesley Hennen: I mean I just thought of thing.

Lesley Hennen: Like.

Lesley Hennen: Do you remember, like skip it you'd like put it on your.

Lesley Hennen: ankle and do like they like didn't fit over my leg braces so I couldn't use that or there was like a roller skates just like putting on roller skates was like not a thing I could do, and like just different.

Lesley Hennen: I don't just things that like weren't necessarily accessible to someone with like mobility assistive devices.

Lesley Hennen: That are on all of these lists, like every 90s kid will relate to, and I like not me.

Nadine Vogel: I should put you in touch with my daughter, she would totally relate.

Norma: I mean just getting down to creating parks that are accessible and it's still not that many of them with our kids.

Norma: can't get on slides and play in some of those things that the typical kids can play with you know you can have to go up this things with my daughter put her on the slide and kind of come down with her.

Lesley Hennen: yeah.

Nadine Vogel: I did that.

Norma: yeah.

Norma: Exactly. As soon as she got to be for the swing so many different things, and they're just now getting around to it and it's very few cities have parks that are accessible.

Lesley Hennen: yeah. yeah. true. ugh.

Nadine Vogel: More work to be done, ladies.

Norma: So. much work.

Lesley Hennan:  Always.

Norma: So much work to be done.

Norma: So who are some of your role models and some things we made some inroads in the disability space and entertainment space that you would like to see know if you ask to work with them or just like them.

Lesley Hennen: yeah I mean I love Ryan O'Connell and special on Netflix that that was the first time I really saw a character that I was like oh this feels real like this feels.

Lesley Hennen: Like authentic and like he's a little bit of an anti hero like that's the kind of character, I love where it's like a.

Lesley Hennen: disabled person making messy choices, because I feel like that's very real and like disability is messy it's not it's not you know, on opposite ends of the spectrum that we've seen you know, the only tragic or only happy and positive.

Lesley Hennen: But yeah so love Ryan O'Connell.

Lesley Hennen: I love the show sex lives of call of college girls and lolo Spencer her character on the show is so good.

Lesley Hennen: i'm hoping, they will that we see more of her in season two so she had some really great comedic lines that I feel like they could do an entire episode around so excited to see those.

Lesley Hennen: Who else.

Lesley Hennen: I don't know it's just very anyone that's out there, like telling their own story that I think that's really exciting for me to see because that's like what i'm hoping to do as well, and I think the more people we get that are just out there, telling our own stories, the more.

Lesley Hennen: More people can see that they can do that too, and then we're just going to get more and more.

Nadine Vogel: So, like you said earlier Lesley it's about authenticity.

Lesley Hennen: yeah. exactly.

Nadine Vogel: being our authentic selves and being comfortable with that, even if others at the moment are not.

Lesley Hennen: yeah. exactly.

Norma: yeah exactly that is so important, so what does 2022 look like, for you as you move forward, you won some awards for your work things you have in store for the world as we move forward.

Lesley Hennen: Ooh well, so I wrote a narrative podcast script with some friends and we recently found out that we won a production grant for it, so we are going to produce that podcast it's like a mystery comedy.

Lesley Hennen: about some high schoolers that discover a murder that was covered up by their town and so very exciting about like thinking about how we might be able to cast that because voice acting is much more accessible to disabled actors so.

Lesley Hennen: Definitely hoping to cast some disabled actors in that as well, and just get some people on board behind the scenes as well.

Lesley Hennen: But so that should be coming out later this year at some point, and then yeah just working on a few different pilot scripts that I've been pitching around and would love to make.

Lesley Hennen: Like some short films or trying to get more into tik tok I love watching tik tok, but maybe maybe some more like a tik tok series.

Lesley Hennen: A lot of really great disability content.

Lesley Hennen: On. tik tok, which is great. 

Norma: I'm so bad about some of those things but. now I'm going to have to start watching tik tok, I don't understand tik tok most of the time.

Nadine Vogel: That's okay, the first time I heard tik tok I thought someone was referring to tic tac toe.

[Everyone laughing.]

Nadine Vogel: I probably shouldn't say that on the podcast, but it is, it is true, but you know it's interesting what you said Lesley about about that on tik tok because I think it's it's this freedom.

Norma: Yes.

Nadine Vogel: To be your authentic selves whether it's from a diversity standpoint intersectionality whatever it is it's just free to be your authentic selves and I, I think you would be interesting and I'll put this out because you have nothing else to do so I'm going to put.

Nadine Vogel: This out. to.

Nadine Vogel: You know how do you scour a tik tok right to find some of these individuals that the studios if they really paid attention to like wow we you know we like I don't know how you do that because, like Norma I'm not really on tik tok very much.

Nadine Vogel: It's on my to do list, but how do you do that, I mean I mean, do you think that would be, I don't even know if that would be helpful I'm just thinking that might be a way to really recognize who's out there.

Lesley Hennen: yeah no that's a great I mean I think there's also a tik tok has an algorithm too so like when you watch it knows the things that you are watching and it will just show you more of those things so.

Lesley Hennen: If people, it also uses hashtag so I know there's like the disability hashtags people can look those up and then you'll see all of the top creators that are creating content about disability and.

Lesley Hennen: Then, in theory, with the algorithm if you keep watching more and more of that it'll just show you more and more.

Lesley Hennen: So yeah if we can get.

Lesley Hennen: The studio's to do that, that would be great.

Nadine Vogel: We have to basically take over their phones.

Nadine Vogel: Okay, so yeah so some covert operations.

Norma: Yes, interesting.  and that's just the thing well to get people to care enough to even want to check things like that out.

Norma: um you know that's something that was a Bank of America just recently came out with a study that said something to the effect that when it comes to DEI and.

Norma: There was some percentage of the disability Community that's unemployed and stuff that we already know, but somehow i'm so glad they included.

Norma: The disability community in the study in the first place, basically it came down to that companies are losing trillions because they're not doing enough.

Lesley Hennen: yeah.

Norma: But. We already knew that what are they prepared to actually get done 

Lesley Hennen: right.

Nadine Vogel: right.

Lesley Hennen: yeah that is that's a number.

Lesley Hennen: I think it was with Nielsen that the disability market is valued at $1 trillion.

Norma: um hmm.

Lesley Hennen: So. You know that includes disabled people, their family members or friends or everybody.

Lesley Hennen: Because, if you if something it's not accessible to us like you know.

Lesley Hennen: Our friends are not going to go like.

Lesley Hennen: We can't go yeah so it's like just losing. you're leaving money on the table.

Nadine Vogel: yeah absolutely I you know, and I was hoping that Covid in some respects, would have a really positive impact.

Nadine Vogel: on individuals with disabilities, especially around employment i'm realizing that you know some some folks who who had significant disabilities.

Nadine Vogel: Who over the years have asked to work from home or from home part time and we're told that we can't do that.

Nadine Vogel: You know, there were more poised than anyone else to do that, my concern is you know, sometimes I think there's a short memory.

Nadine Vogel: And as we go back to our workplaces I'm just hoping that companies organizations don't forget.

Nadine Vogel: Right, the power that people with disabilities really bring in, and I think you know even even from an entertainment in some respects, especially from an entertainment standpoint.

Nadine Vogel: So I guess if there is, you know if there was one thing, maybe there's more than one Lesley that you would like to get across to our listeners.

Nadine Vogel: You know what is it and and our listeners, you know our people with disabilities people caring people with disabilities, people without disabilities, like everybody right.

Nadine Vogel: What does is it if you could get one or two real messages to them about what they could do something we could actually do as a result of this conversation today what would that be.

Lesley Hennen: I feel like really the heart of everything for me is like disabilities, not a bad word so just.

Lesley Hennen: say the word more.

Nadine Vogel: okay.

Lesley Hennen: Because that's just going to make everyone more comfortable with the word and then that's going to help everyone, I feel like essentially that's sort of at the root of a lot of.

Lesley Hennen: The things that disabled people have experienced for so long is like this stigma and so getting rid of that you know definitely will help, and I think really hiring people as well it's like.

Lesley Hennen: Thinking about accessibility is really for everyone, you know people oftentimes think of accessibility, like oh it's going to be more expensive it's going to cost.

Lesley Hennen: so much money and it's really just ask people like if you're in a hiring position and just you just ask someone like what do you need to do to do your job, like what do you need.

Lesley Hennen: And that you know it doesn't force someone to disclose if they don't want to they can just simply ask for something they need to do their job and that is something that can apply to anyone that is working.

Lesley Hennen: So I think yeah just thinking of things more big picture, not trying to separate out disability and accessibility from other things.

Nadine Vogel: So, so you know, thinking of people with disabilities as people first.

Lesley Hennen: yeah. exactly.

Nadine Vogel: Right. people first and and that if they do have a disability to understand that disabilities do matter.

Lesley Hennen: yeah right.

Nadine Vogel: they matter in that how we to your point, how we accommodate.

Nadine Vogel: But they also matter, I think, because for some people, the disabilities would they like to refer to with their superpower right and it gives them skill sets and abilities or insight that perhaps others haven't had.

Nadine Vogel: so well, this is great I norma anything else you want to ask I think we're running out of time I can't even believe it.

Norma: Any any way to reach you if anybody had any other questions or any things like that, how could they get in touch with you.

Lesley Hennen: Instagram and Twitter.

Lesley Hennen: Leslie hennen l-e-s-l-e-y h-e-n-n-e-n the same on both yeah reach out I'm always on Twitter so that's probably.

Lesley Hennen: the best way to get ahold of me.

Nadine Vogel: Well, thank you so much for taking the time to speak with us and our audience today norma, as always, love doing this with you love creating this movement and growing this movement and Lesley tell everyone that you know about this podcast because it is important, it matters.

Lesley Hennen: Yes, I will, thank you for having me.

Nadine Vogel: Absolutely so to our audience Thank you once again for joining. Norma we'll see you on the next time.

Norma: Thank You guys be blessed see you soon.

Nadine Vogel: Bye bye everybody.

Lesley Hennen:  Bye bye.

 

Closing comment:  [Music playing in background.] Thank you for listening to this week's episode of disabled lives matter. We look forward to seeing you next Thursday.  Have a great week!

Disclaimer: The views, information, or opinions expressed during the Disabled Lives Matter podcast series are solely those of the individuals involved and do not necessarily represent those of Springboard Global Enterprises, Springboard Productions, and its employees, contractors, subsidiaries, and affiliates.  The developers of the Disabled Lives Matter podcast are not responsible and do not verify for accuracy any of the information contained in the podcast series available for listening on the Podbean hosting site and/or any other associated hosting entity. The Primary purpose of this series is to educate and inform, and does not constitute disability, medical and/or other professional advice, and/or service(s). This podcast is available for private, non-commercial use only. Advertising incorporated into, in association with, or targeted toward the content of this podcast, without the express approval and knowledge of the Disabled Lives Matter's site developers is forbidden. You may not edit, modify, or redistribute this podcast.  The developers of the Disabled Lives Matter site assume no liability for any activities in connection with this podcast or for use of this podcast in connection with any other Website, Computer, and/or listening device.

 

S2-Ep09_Donna Davidson

S2-Ep09_Donna Davidson

March 24, 2022

Season 02, Episode 09
Co-Hosts: Nadine Vogel & Norma Stanley
Guest: Donna Davidson

Intro: [Music playing in background] Disabled Lives Matter... here we go!

Voiceover: Hello and welcome to this week's episode of the disabled lives matter podcast. Let's welcome co-hosts Nadine Vogel and Norma Stanley.

Nadine Vogel: Hello Hello everyone, welcome to another fabulous episode of disabled lives matter we are more than just a podcast we are a movement in part because of my fabulous co host Norma Stanley.

Norma: Hello everybody how you guys doing today.

Nadine Vogel: Good good very excited norma you and I. I know are both excited about who we're going to be interviewing today.

Nadine Vogel: So Donna Davidson has joined us, and she is President and CEO of Easter seals North Georgia, I believe, one of North Georgia one of Georgia's largest nonprofit organizations so um Donna welcome.

Donna davidson: Welcome Thank you so much for having me happy Monday.

Nadine Vogel: Happy Monday, Tuesday, Wednesday. yeah.

[Everyone laughing.]

Nadine Vogel: Whatever day it is um so tell us you know before we go into Easter seals and some of the work that's done there tell us a little bit about you, I understand you started your career as a speech language pathologist therapist for children.

Donna davidson: I did, I have always had a love for children and I started my career as a speech and language pathologist working with children, I started actually in the public schools.

Donna davidson: And then I was really interested in going into a management position, so I joined Easter seals in the State of Massachusetts in 1987.

Donna davidson: As their director of therapy services, and then I worked into their director of marketing services, and then I was offered the position in North Georgia to come and lead that organization.

Nadine Vogel: got it so you've been with them a while you're you're you're very intimately familiar with the inner workings so we'll have to get into that [laughter].

Donna davidson: Yes. I just celebrated my 30th anniversary with Easter seals North Georgia as the CEO.

Nadine Vogel: wow so I'm curious how many Easter seal chapters are in Georgia and then how many nationally.

Donna davidson: There are five separate Easter seals chapters in Georgia, and we all do, different things, because we really look at the needs within our communities and in the nationally, we have 72 chapters.

Nadine Vogel: Oh, my gosh Okay, and is it is it the same thing that each chapter looks at the Community it serves and says here's the things we should be doing.

Donna davidson: Absolutely, we look at what the needs are within our particular communities and that's where we focus our efforts Easter seals mission is pretty broad we work with.

Donna davidson: Everything from newborns all the way through seniors and everything in between, so we really try to find where our efforts will make the most difference.

Nadine Vogel: And do you i'm just curious, you know as as demographics change as medical technology changes have you found, since you've been with the organization so long have you found that the kinds of programming that you provide has also changed over the years.

Donna davidson: Yes, we have found that you know, with the advent of technology and thank goodness for that.

Donna davidson: Particularly during the pandemic we've been able to add Tele practice services to work with the children that are in our Program.

Donna davidson: We were able to do that when we had to close our early education program so we were able to do that via technology and we were also able to provide all of our therapy services via technology as well.

Donna davidson: What we are finding, however, is that the children that are in our service we're finding.

Donna davidson: You know, we may start with one service and find that there are more and more gaps, so that we have had to start to add more and more services as we go along.

Donna davidson: With the years going by we have more advanced evidence based practices to work with the children that we serve, but the need certainly has not dissipated at all.

Nadine Vogel: got it got it so maybe you could share with our audience what are, and this is probably a really little question for a very big answer, what are all of the programs and services that you guys provide today.

Donna davidson: Well, at Easter seals North Georgia our largest service is our early education and care program, and that is.

Donna davidson: for children from six weeks to five years of age, with or without disabilities 100% of the children enrolled are living at 100% below the poverty level.

Donna davidson: What makes this program a little bit different is that we provide really comprehensive services we make sure the children get their medical their dental care.

Donna davidson: Their disability services their social emotional services and their education services, and on the other hand.

Donna davidson: We work with parents to make sure that they become their child's first and most important teacher an advocate, and we also help them to obtain.

Donna davidson: A higher level of self sufficiency, so we offer everything from G-E-D, job training, parent training, etc.

Donna davidson: Our other large program is our early intervention program and through that program we provide services for children birth to three.

Donna davidson: with disabilities and we provide those services in the counties of Gwinnett, Newton, and Rockdale counties just in those three counties we're working with over 2000 children, young children. with disabilities.

Nadine Vogel: wow.

Donna davidson: We also have a unique program called champions for children and it's the one program that we do throughout the state of Georgia.

Donna davidson: That program is a little bit unique because it's for children up through the ages of 18 who have a really significant disability.

Donna davidson: But they are middle income or upper income but have the needs that would actually you know, perhaps.

Donna davidson: warrant institutional care and they were denied any assistance from the katie Beckett, or the deeming waiver.

Donna davidson: So through that program we're able to provide resources to families up to $3,000 per family to use on whatever it is, they need and for most families it's to either pay for therapy services that aren't covered by insurance.

Donna davidson: Or that they use those that those funds to provide anything with for medicines, adaptive equipment, etc.

Donna davidson: we're really excited because we also provide.

Donna davidson: Early childhood mental health and we've been doing that program for probably about 25 years, and when we started everybody looked at me cross eyed.

Donna davidson: What do you mean you're working with children that are three years old and and have social emotional challenges.

Donna davidson: Well it's real today it's really something that's being discussed on the national levels.

Donna davidson: And we've been doing that, with the children that are enrolled in our early childhood program and hoping as soon as we have an ability.

Donna davidson: To access medicaid billing and private insurance, that will be able to take those services into the county and then our last service is really a very, very unique program it's called a foster grandparent Program.

Donna davidson: And this program is for seniors who are living in poverty and want an opportunity to get back out into the Community.

Donna davidson: So they work in nonprofit nonprofit early childhood centers who have children that are at risk or who have a disability and they work, one on one with them in the classrooms they're paid a very small stipend.

Donna davidson: But it really is wonderful, because children get to have a grandma or grandpa in their.

Donna davidson: In their classroom and it really gives the seniors an opportunity to get back out into the Community, I think our oldest foster grandparent was 89 years old.

Donna davidson: Volunteering with us so we offer an array of services, but, as you can see they're all geared towards working with children and their families.

Nadine Vogel: yeah so so wow.

Nadine Vogel: that's a lot, and so, for me, and so norma, I don't know about you, but, for me, I think the first thing that just surprised me was the first program where you said i'm working with with folks.

Nadine Vogel: Six weeks to five years, but with and without disabilities, I had no idea I always thought Easter seals was you know disability only norma how about you. did you know that.

Norma: I didn't know that, that was a surprise. so why is that.

Donna davidson: Well, Easter seals went into the field of early education, because children with disabilities couldn't find a place to go into early education or childcare.

Donna davidson: A lot of child care centers were very, very scared you know they didn't have the skills to to work with children with disabilities.

Donna davidson: They couldn't provide you know lower ratios and so Easter seals actually in North Georgia we're actually in the state of Georgia, we were the very first inclusive childcare that opened.

Donna davidson: In 1992 we really believe in inclusion and And what better way to start than when children are first born and first diagnosed, so all of our classrooms and we have 19 locations.

Donna davidson: And we work with over 2000 children a day all day long and children with him without disabilities are enrolled in the same classrooms and it's wonderful for all of the children.

Nadine Vogel: wow.

Norma: I know when Sierra was young, you know, and she was born in 88 that was not available to us, and that is still such a major need finding childcare for parents who need to go back to work.

Norma: And so, that is something that is really important to parents, because you know you have to be comfortable with whom, you're leaving your baby with, when you have to go back to work, and that's such a big need should be bigger.

Norma: You know, they need more centers.

Donna davidson: It should be and it's so wonderful because we have a therapists that work in the program we're really excited right now, because we have quite a number of children who have been diagnosed with autism spectrum disorder.

Donna davidson: And we're working on a new model so that those children can also successfully be included within the classroom so we're working with.

Donna davidson: A-B-A and working on being able to place a registered behavior therapist in the classroom one on one with the children so that they have all their needs, met in one location, which is also fabulous for working parents.

Norma: Absolutely absolutely that's very exciting.

Nadine Vogel: yeah and you know same here you know Gretchen my older daughter was born in 91 and now she needed RN care so and she had RNs until she was 13 so we took it to a whole nother level right, we had the RNs in the classroom was with her, etc.

Nadine Vogel: So that was that was pretty wild, but I think that that's that's amazing that you do that, and the other end I love the whole foster grandparent thing I. think that it's.

Nadine Vogel: Really cool again something I wouldn't have.

Nadine Vogel: imagined you guys doing but I totally get the connectivity and back to special needs kids, so I think that's fabulous.

Nadine Vogel: So I want to touch on the early childhood mental health, we need to go to a break in just a minute, when we come back I would love to just talk a little bit more about that because.

Nadine Vogel: You know I will tell you when when my older daughter was younger because of all the therapies and all the things she was getting we brought her to see a child psychologist.

Nadine Vogel: I think she was about three or four probably about three when we started doing that and to your comment earlier Donna, you know people looked at me like I have four heads they're.

Nadine Vogel: Like no don't, why are you causing a problem that doesn't exist and it's like.

Nadine Vogel: no, no, no i'm trying to help her so She'lll know how to cope and and so forth, so when we come back from break I would love to touch on that because I think that.

Nadine Vogel: that's just something nobody's talking about, even though we are talking more about mental health, these days, certainly we're not talking about it, relative to these very young children.

Nadine Vogel: Who are born with or acquired disabilities so on so for our listeners don't go away, we will be back in just a minute speaking with Donna Davidson and talking about Easter seals North Georgia all right be right back.

Voiceover:  And now it's time for a commercial break.

[COMMERCIAL]
Have you attended a springboard Consulting event? Well, you should, we have the best events and our 2022 events are just under way. Firstly is the Brg Summit happening on Tuesday, April 26th, and then following that is Disability Matters. North America Conference and Awards that's happening Wednesday and Thursday, April, 27 and 28. Both events are being delivered by a live stream. If interested in attending, please visit www.consultspringboard.com for more information.

Voiceover:  And now back to our show.

 

Nadine Vogel: Hello Hello everyone, this is nadine vogel and we are back with my co host Norma Stanley, hey norma.

Norma: Hey.

Nadine Vogel: And we are interviewing the lovely Donna Davidson today from Easter seals North Georgia so before we left for break Donna, you were sharing that you have a program it's around early child mental health.

Nadine Vogel: We know today the mental health has been talked about quite a bit, but I think more so, either in the adult community.

Nadine Vogel: or in that tween teen you know and off to college I don't think I could be wrong, I don't think people are really thinking about this in terms of very young children, especially on children with disabilities.

Nadine Vogel: You know norma and I both are moms of adult daughters with disabilities and, and I think we both can attest, you know when our girls were young when mine was young, we took her for therapy.

Nadine Vogel: For to make sure that she knew how to cope and didn't you know have negative feelings about what she was going through, or at least learn how to deal with them so i'm curious what is, how does your program work and what's been the response.

Donna davidson: Well, first of all, you know to your point we didn't even check children for for difficulties with social emotional behavior.

Donna davidson: As I told you earlier, we administer the early intervention program for for three counties and while there was always.

Donna davidson: A service there to provide psychological counseling i'll tell you that's one thing that you know it very infrequently did it ever occur.

Donna davidson: And then we started to notice that particularly children living in high risk situations.

Donna davidson: were exposed to lots of different types of trauma and that also applies to children with disabilities or children with significant medical health.

Donna davidson: issues in and out of the hospital being separated for mom you know with with the earliest infants, we are often begins to show up is in their digestive system.

Donna davidson: A great psychologist friend of mine said when I asked him what I said, you know we've got we were getting all of these children.

Donna davidson: That have some some really difficulties with their you know their gastrointestinal system, and he said, you know what Donna and infants stomach.

Donna davidson: is like their second brain right so that's when it begins to show, so you start to begin to see these these kinds of difficulties.

Donna davidson: when children are really, really young like you know it two or three weeks we really work to involve the parents in the situation as well.

Donna davidson: So we have a number of different treatments, we have parent and child play therapy, we have.

Donna davidson: Child and parent psychotherapy we have a lot of those things, but it begins with a screening and diagnosis, so now every single child that comes into our any of our programs.

Donna davidson: Within the first 45 days we do a social emotional assessment, and then we do an observation on them.

Donna davidson: And that's really important because we begin to see and it's not just the child that may be acting out.

Donna davidson: You know, you also have that child we have children that have selective mutism that don't talk.

Donna davidson: or children that are overly quiet, so we work to try to through play therapy and other methodologies that I spoke about to work to identify what's going on with that child and what's going on at home with that parent.

Donna davidson: and working with them to help to meet the needs of that child, you know relationships during those early years are absolutely key.

Donna davidson: So anything that that you know they're through a separation or through trauma that interrupts that you know, will cause cause difficulty and, unfortunately, in this day and age we have a lot of very young children, both with and without disabilities who are.

Donna davidson: experiencing trauma that they should never be experiencing in their lives, and if you don't have strong social emotional skills, there really isn't much you can do outside of that because it just gets in the way of your learning.

Norma: yeah.

Norma: And how do you address the parent you're talking about the training of the parents, because some of the things that i'm seeing.

Norma: Even today, and you know this, my daughter is in her 30s now, but some of the things that i'm seeing today were things that I saw when she was a little girl.

Norma: And a lot of parents today as many organizations that are out here like yours, some of them are falling through the cracks they don't get the support they need to help their children if they even realize they need to get the support.

Donna davidson: Well, first of all, I will tell you one of the things that i've been sort of really advocating for for for since we started this program.

Donna davidson: And you know a lot of children, particularly children with disabilities need to access our state's medicaid system to get their services, and we were covering social emotional you know mental health challenges for children, but we only started at age four.

Donna davidson: So that was a huge problem, because we were noticing children much younger and you know norma doc's aren't necessarily even picking up disability sometimes.

Norma: That's right. 

Donna davidson: You know, if it's a really. quick visit, and you know they're supposed to be doing at certain intervals M-CHAT to diagnose autism, but I was on a call the other day with with.

Donna davidson: representative of physicians group, and they were like What do you mean two and three year olds.

Donna davidson: You know that that are having such what does that look like so first of all, we have a lot of education to do.

Donna davidson: You know what is normal two year old behavior because we know, two year olds are going, you know go through their own things right.

Donna davidson: And then, what are the signs learn to know the signs, the child is having a difficult just a you know, a difficulty and then the other part of it is parents being willing to participate in that you know it's it's hard as a parent to say.

Donna davidson: You know what do you mean my child has some social emotional issues going on, you did did I do something it's hard it's hard to do that.

Donna davidson: And so it's working with the parents to talk about you know what.

Donna davidson: When when children are born, they don't come with with a book right every child is an individual, and so we have to learn about a child's development.

Donna davidson: And we have to learn how to respond to different behaviors when they occur and and i'll tell you during the pandemic with kids being home.

Donna davidson: Right now, in our early childhood program we have 250 children that we are working with that are dealing with some kind of social emotional challenge, so it really is becoming you know.

Donna davidson: increasingly more important that those services are provided.

Nadine Vogel: It isn't it also preventative right in nature, in that you know I know like for our daughter, you know she was having surgery, she was having all of these things.

Nadine Vogel: You know I wanted to make sure that she felt good about that or as she was getting a little older the bullying.

Nadine Vogel: right that that goes on, unfortunately, on kids for kids with disabilities, so I think part of it, too, is preventing what could come down the road by doing some of this early on, but would that.

Nadine Vogel: be appropriate.

Donna davidson: Absolutely, so when we when we look at children in our program and we kind of make this pyramid right.

Donna davidson: And at the very bottom level of the pyramid is the the preventative stage and the educational stage, so if I think that all parents should be able to go through.

Donna davidson: Some training and talking about how to address some issues, particularly parents with disabilities, think about.

Donna davidson: When if you have a child that was born with a disability, how overwhelming it is you know you you're worried about their medical health and their therapy needs, and then you start worrying about what's going to happen when they get older so parents needs support.

Donna davidson: As well as giving that support to their children, so I absolutely think that the ability to have that parent training available for them.

Donna davidson: is so very important because, as issues arise, or as signs start to arise they'll start to be able to notice them and get their child the the the assistance they need.

Nadine Vogel: mm hmm yeah no absolutely so i'm just for for everyone who is listening now you when you talk about disabilities, you talk about all disability types Is that correct.

Donna davidson: Correct yes.

Nadine Vogel: So, because I know you mentioned autism but it's also cerebral palsy and down syndrome and.

Nadine Vogel: It could be someone who's undiagnosed that has.

Donna davidson: We are, yes, we are not a disability specific organization and, if you look within our programs we we have children with.

Donna davidson: Almost every type of disability that you could think of so even in our early education program we have children with feeding tubes.

Donna davidson: You know, we have children with pros prostheses we have children in wheelchairs, we have children with cognitive disabilities, children with down syndrome, whatever the need is.

Donna davidson: We work to try to address that need and what's great about the early education program is that every single child in that Program.

Donna davidson: Regardless of their abilities has their own individual plan, because you know what No two children ever learn at the same pace, so we it so if you if you look at educating children with disabilities, with that lens.

Donna davidson: it's easy easy to include them.

Nadine Vogel: Right right absolutely so um so norma and I are intimately familiar with early intervention and what that means, but for our listeners maybe we have listeners that have you know newborns they haven't even heard the term, can you share with everyone what early intervention means.

Donna davidson: Yes, I can so first of all what's very wonderful is that there is a federal Program.

Donna davidson: that's called I-D-E-A part C that's for children from birth to three years of age, so within every state in the United States there is a system of care for children that are born with a disability.

Donna davidson: In Georgia, we have a program that's called children's first So if you have a child that's born in the hospital and they have.

Donna davidson: A disability.

Donna davidson: at birth, they are automatically with parent permission referred into that system, so, in our case oftentimes you know, once the child's health is you know, is at at a safe place.

Donna davidson: You know we're in that house with that family right away when they come home from the hospital.

Donna davidson: And what What that means is is that we're in there to help identify whatever services that your child may need to keep their development on track.

Donna davidson: So it could be physical therapy, it could be speech therapy, it could be, you know, maybe the child is developing, but, but when you need some service coordination to keep things on track.

Donna davidson: But we send the therapists right into the home within the natural environment and deliver all of those services, all of the evaluations are free of charge.

Donna davidson: And the services are looked at from a sliding scale perspective, so you know, we have, as I said in our program we have over 2000 children.

Donna davidson: That are getting those services and it's so critical because we're there to to partner with the family from very early on to start to address those disabilities in the hopes that.

Donna davidson: By the time that child is ready to enter kindergarten let's say we've provided the services so that they can participate in the least restrictive environment possible.

Nadine Vogel: Right. Now, obviously every state works really every state work Similarly, they all all have New Jersey, has the Department of developmental disabilities everybody has one of those.

Nadine Vogel: But my question to you is for Easter seals, is it the same in every state that no matter what that service is that the services you provide the evaluation Those are all free of charge, you come in the home, that is, that identical in all States.

Donna davidson: Yes, that is, that is part of the federal law law and and the service coordination is provided free of charge, as well.

Nadine Vogel: that's great.

Norma: How do you get your funding.

Donna davidson: Easter seals has federal funding state funding and then we do a lot of fundraising as well.

Nadine Vogel: okay

Norma: awesome.

Nadine Vogel: yeah no absolutely so um if we have a family that that is listening to this and says oh my gosh I need to get in touch.

Nadine Vogel: How do they do that I guess i'm going to ask three ways, and if you have the answer for all three so one would be for North Georgia.

Nadine Vogel: One would be.

Nadine Vogel: Georgia in general or really the third would be like nationally in any state how do they get in touch to just at least communicate with someone like yourself or someone on your team to find out what they can access.

Donna davidson: Well, first of all, if they go through Easterseals.com they'll take it to the national website and then within the national website, you can just put in, where you live.

Nadine Vogel: Oh, okay.

Donna davidson: And then it will automatically let's say you live in one of our counties that would automatically pop up with us, and then you can just every day I get.

Donna davidson: messages and they actually come to me directly, and I respond to them about you know programs and services that are available.

Donna davidson: oftentimes will get requests for services that we perhaps don't provide but I always try to provide them with another resource to get the services that they may you know they they need for their child or the or an adult with disabilities.

Nadine Vogel: got it got it, I mean this is this is so important and I made use of Easter seals. I was living in L-A at the time with my older daughter, and they provided respitality know it's like a respitality weekend kind of thing, and I was so.

Nadine Vogel: So i'm I love Easter seals.

Nadine Vogel: i'm big believer so, you know as we get ready to close out, I mean you know you mentioned about Covid earlier and that you know you were able to provide a lot of things through technology.

Nadine Vogel: As we are God willing, coming out of Covid hopefully not into something else, what would you say that the state of the state is right now for the services you're providing and looking you know moving forward the next 12 to 24 months.

Donna davidson: Well, I think, first of all, with everything that went on, with Covid I think the what's concerning to all of us in the disability field in the early education field is the lack of direct care providers during the pandemic, a lot of direct care providers left the field and so. In order. for us.

Donna davidson: To get back you know to full tilt we're going to really you know I mean we're recruiting every day to look at you know, having high quality.

Donna davidson: folks work with our our children that are in our program so that's, the first thing that that we're battling.

Donna davidson: The second thing that we know that as children are coming back into the program, we know that a lot of children didn't visit their pediatricians.

Donna davidson: During that that time, so our even our referrals to our early intervention program were down the last two years, so what we know is that there's probably a lot of children out there that.

Donna davidson: have been missed norma as you put it, that have slipped through the cracks because they weren't seeing their Doc so they you know they're behind it immunizations they're behind in well baby checks all of that.

Donna davidson: We also know, as I discussed earlier, the need for services directed to social emotional.

Donna davidson: Development is key, and some of its just because the kids didn't have any social social interactions during that time period.

Donna davidson: That you know they were doing a lot of screen time whether it was for school or just watching TV, so what we're finding as children are re entering the program is that they don't know how to play with one another.

Donna davidson: Well, some of our babies never saw another child they were born during the pandemic and they did not see another child during this two year period of time.

Donna davidson: We have kids because of the masks that are having problems with speech and language development because they couldn't see.

Donna davidson: The mouth So those are so Those are some of the the impacts that we're seeing based on that and then in our in our early education Program.

Donna davidson: Normally, for our three and four year olds that's a 10 month program when we have a smaller summer month Program.

Donna davidson: But this year we're going full year because of so much that was lost, and when you look at the first five years are the absolutely most critical in terms of a child's development so we've got to get these kids caught up.

Donna davidson: On services, I think Tele therapy is here to stay, you know we're so excited about it because it helps us with the first problem that I talked about in terms of finding enough direct care providers or therapists being able to do some of that.

Donna davidson: You know utiliz utilizing technology will help help quite a bit.

Nadine Vogel: It helps it just does it, you know there's so much do I think back to when my daughter had all had therapy and thinking about how you know what if she was young, now, and I think Tele therapy is great for some things, but this is so much that you know the therapist has to be hands on.

Donna davidson: Absolutely. 

Nadine Vogel: Right. feeling the muscles and moving you know and touching the body and and and things that parents either are not equipped to are just not comfortable to do.

Donna davidson: Absolutely.

Donna davidson: And we found that as well yeah parents were really ready for us to.

Donna davidson: Come back into the home.

Donna davidson: But at least we were able to work with the parent during I mean, can you imagine two years without being able to access any of that therapy.

Nadine Vogel: No, no, I really can't I mean my daughter had 11 hours a week of OTPT speech for years, I cannot imagine going from 11 hours a week to zero.

Donna davidson: Yes.

Nadine Vogel: and where she would have.

Nadine Vogel: been as a result that probably is is definitely disheartening but with that we are out of time, oh my gosh I can't even believe it.

Nadine Vogel: But Donna, I just want to say thank you Thank you so much to you all the work you do and to Easter seals you guys are just so important to all of us as special needs parents, I could tell you.

Nadine Vogel: That.

Norma: Thank you so much.

Donna davidson: yeah Thank you.

Donna davidson: So much for having us.

Nadine Vogel: Absolutely and norma another great episode, thank you for being my special partner, and we will see you all on another episode of disabled lives matter bye bye everybody.

Norma: bye be blessed.

Closing comment:  [Music playing in background.] Thank you for listening to this week's episode of disabled lives matter. We look forward to seeing you next Thursday.  Have a great week!

Disclaimer: The views, information, or opinions expressed during the Disabled Lives Matter podcast series are solely those of the individuals involved and do not necessarily represent those of Springboard Global Enterprises, Springboard Productions, and its employees, contractors, subsidiaries, and affiliates.  The developers of the Disabled Lives Matter podcast are not responsible and do not verify for accuracy any of the information contained in the podcast series available for listening on the Podbean hosting site and/or any other associated hosting entity. The Primary purpose of this series is to educate and inform, and does not constitute disability, medical and/or other professional advice, and/or service(s). This podcast is available for private, non-commercial use only. Advertising incorporated into, in association with, or targeted toward the content of this podcast, without the express approval and knowledge of the Disabled Lives Matter's site developers is forbidden. You may not edit, modify, or redistribute this podcast.  The developers of the Disabled Lives Matter site assume no liability for any activities in connection with this podcast or for use of this podcast in connection with any other Website, Computer, and/or listening device.

S02-Ep08_Kyle_and_Brent_Pease

S02-Ep08_Kyle_and_Brent_Pease

March 10, 2022

Season 02, Episode 08
Co-Hosts: Nadine Vogel & Norma Stanley
Guest: Kyle and Brent Pease

Intro: [Music playing in background] Disabled Lives Matter... here we go!

Voiceover: Hello and welcome to this week's episode of the Disabled Lives Matter Podcast.  Let's welcome co-hosts Nadine Vogel and Norma Stanley! 

Nadine Vogel: Hello Hello everyone, this is nadine vogel I am joined by my co-host Norma Stanley. hey norma.

Norma: hey everybody.

Nadine Vogel: And we're here today, bringing you another episode of disabled lives matter, so we are more than just a podcast we are a movement.

Nadine Vogel: And joining us today are brothers Brent Pease and Kyle Pease to talk to us about some of the absolutely astonishing.

Nadine Vogel: astonishing physical things they do that in my wildest dreams, I could not imagine doin.g so let's start with kyle let's let's start with you you're I think a four time iron man triathlete. Is that correct.

Kyle Pease: i'm actually a five time iron man triathlete. 

Nadine Vogel: I can't even imagine doing one so well congratulations and in total i've heard that you've done like. i don't know is it 70, 80 races.

Kyle Pease: Yeah that's it right there, I say we both lost count of how many we've done.

Nadine Vogel: Wow

Norma: And they do it together, so this is really awesome I got a chance to hear your story at the International disabilities day that Coca Cola had, and I was like.

Norma: These people live, right here in Georgia and I didn't really know that and I need to talk to them.

Nadine Vogel: You never know your neighbors absolutely so kyle you were born with cerebral palsy and use a wheelchair, if I understand correctly.

Kyle Pease: yes. that is correct. I have spastic quadriplegia and I use a motorized wheelchair.

Nadine Vogel: Okay. All right, well let's come back to you that you, you got you into college where was it kennesaw state.

Kyle Pease: yeah yeah.  yeah. kennesaw state.

Nadine Vogel: And you majored in what.

Kyle Pease: I majored in sports management.

Nadine Vogel: Huh. Okay.  Things are starting to make sense.

Kyle Pease: yeah.

Nadine Vogel: yeah all right well let's go back to you and let's go to Brent your brother so so read for you, my understanding is you don't have any physical disabilities but you've been involved in fitness and training for a long time.

Brent Pease: yeah that's correct.

Brent Pease: No, no physical limitations, except at the end of an iron man.

Nadine Vogel: Okay yeah.

Nadine Vogel: i'd be dead after and iron man, if I did that, and I believe you've done is it 10 or 11 iron mans.

Brent Pease: I guess now it's a 11.

Nadine Vogel: Oh yeah Okay, that is just that's that's that's beyond human.

Nadine Vogel: So talk to us about how the two of you came together to start doing races these ironman races together.

Nadine Vogel: And then you know what what kind of came into your hands and say hey why don't we go ahead and do something together like that.

Brent Pease: Go ahead. Kyle.

Kyle Pease: So Brett is my older brother.

Kyle Pease: by two years. and I also have a twin brother but Brent was always there because he's the big brother.

Kyle Pease: So he always looked out for me and I.

Kyle Pease: When he got out of college he started taking up 5K.

Kyle Pease: And 10Ks, to work his way up to iron man and he did the 10 at louisville and he invited the whole family to attend.

Kyle Pease: And I don't get it all and memorized, but all Brent did that day and all the other athletes and it really reminded me of my life, and what I go through on a daily basis of the highs, the lows.

Kyle Pease: The joy you get at the end of his very long day that day um I asked Brent a lot of questions.

Kyle Pease: And then the last question I asked was can people in wheelchairs do the ironman. So the whole journey started.

Kyle Pease: And I we never looked back since.

Nadine Vogel: And I think wasn't it in 20 2018 that you guys like made history as the first brother duo to compete in the iron man.

Kyle Pease: Yes.

Nadine Vogel: that's that's incredible.

Brent Pease: Well that's That was the ironman World Championships in kona Hawaii so.

Brent Pease: I came in at the tail end of a conversation we're getting started and I heard.

Brent Pease: Somebody talking about being in Florida and.

Brent Pease: Kyle and i've done iron man in Florida, and I just want to state for the record that we much prefer to race in Hawaii than Florida.

Norma: [laughter.]

Nadine Vogel: Okay. I'm not going to take this personally.

[All laughing.]

Norma: Hawaii is beautiful. well we can understand that.

Nadine Vogel: i'll tell you i'd rather race in Hawaii than in Florida too.

Nadine Vogel: So do you're doing this together, but I think that you actually kind of you've gone beyond in racing together you guys have developed and formed the foundation, the kyle pease foundation so tell us a little bit about that, and it we'll come back to more of the specifics of the racing itself.

Nadine Vogel: Who wants to take that one on.

Brent Pease: yeah so um.

Brent Pease: Really when kyle finished his first race, you know we were just sports fanatics we've been doing sports our whole lives it's just.

Brent Pease: No, no different than a lot of young young boys that were into everything at the time football baseball basketball, you name it.

Brent Pease: But none of those really had the full inclusively that endurance sports offers and so when kyle experienced that first endurance activity.

Brent Pease: and realized that it challenged him physically and mentally in ways that he had never been pushed from an athletic perspective, certainly i'm sure as you've experienced with many of your guests, you know living with a disability, has its own challenges.

Brent Pease: And kyle kyle has experienced many of those but what he had never experienced was what is life like as an athlete.

Brent Pease: And really the best way I can describe it to you is is the iron man that it takes kyle and I 14 to 16 hours to finish this.

Brent Pease: And throughout that process it for me there's a there's a physical demand of carrying another human being 140.6 miles, but for kyle he has to keep me engaged i've quit thousands of times in the middle of a race thousand.

Brent Pease: Where i've turned to kyle and begged him to stop or i've grunted and made noises and make gestures, where he can tell that I was trying to find a way to make the date easier.

Brent Pease: But kyle's experiences of living with a disability taught him how to overcome a lot of that and so.

Brent Pease: For him, though he mentally has to be positive for 14 to 16 hours to keep me engaged physically but.

Brent Pease: it's also a challenge on his body, you know he goes from sitting in a wheelchair all day to getting bounced around and push physically.

Brent Pease: In an iron man and so that experience for kyle he wanted other people to have that and that was where the Foundation came in.

Brent Pease: And we were just fortunate that there was other people in the country that had had done or were doing.

Brent Pease: What we were doing from a supporting people with disabilities standpoint, so you know we quickly found the right equipment, you know you can find some of the stuff on Amazon, like everything else.

Brent Pease: A lot of it is just like so much in the disabled, the disability community we get custom chairs actually right here in Georgia and snellville Georgia.

Brent Pease: From a company called eagle sports chairs and then there's another wonderful company in Tacoma Washington called adaptive adaptive star mobility.

Brent Pease: So, most of our adaptive equipment comes from those two companies, and then the bikes come from a company in in winnipeg called freedom concepts so.

Brent Pease: it's a really cool way for us to to teach people with disabilities about not only how to be an endurance athlete but how to do it, like everybody else there's just there's no limitations when it comes to that.

Nadine Vogel: Right. And is your focus children, is it adults, is it kind of all across.

Kyle Pease: um yeah.

Kyle Pease: So we serve all at all ages and all types of disabilities too.

Kyle Pease: We had a child at the age of four to participate.

Kyle Pease: And we had.

Kyle Pease: A gentleman in his 50s to participate in a race. so we accept all ages, all abilities, and ages and abilities to join us.  

Nadine Vogel: That that's that's amazing so so kyle if I may how do you manage your CP during a race, I mean, I have to, I have to believe that is above and beyond the things that you need to do to keep yourself going.

Kyle Pease: yeah no absolutely I think the first thing that I had to.

Kyle Pease: manage it.

Kyle Pease: Remain in the moment and.

Kyle Pease: Remember to breathe.

Kyle Pease: We really helped me get though all my spasms you know that, so if I don't breathe my spasms are all over the place i'm really had to the breathing and then focus on.

Kyle Pease: drinking water.

Kyle Pease: Because i'm very bad at drining water.

Norma: And so am I.

Nadine Vogel:  Me too.

Kyle Pease: So, So you're going through a race completely going through a race I'm really focus on my.

Kyle Pease: hydration and my nutrition.

Kyle Pease: to make sure that i'm at my best on race day, so I you know I never really been asked that question, so thank you for asking that question.

Kyle Pease: People you know, they need to know that on race day.

Kyle Pease: my cerebral palsy doesn't stop.

Kyle Pease: You know, I maintain but but I never let my disability define, who I am.

Kyle Pease: And I that's very important.

Kyle Pease: And that .

Kyle Pease: Regarless of how my day is going i'm going to go to the starting line with my head held high and.

Kyle Pease: show the world and to motivate my brother.

Nadine Vogel: So with your head held high, tell me where is your head like what is it you have to focus on think about you know to motivate yourself and then we'll talk about motivating brother let's start with you.

Kyle Pease: I you know I I you know I meditate a lot throughout the course of the day and.

Kyle Pease: You know I might say a prayer or I might say something that motivates me to get me over the hurdle, because, there are so many ups and downs in a race.

Kyle Pease: That you really have to experience them and when we're in a low point you have to go there for a second, you have to go to the low, but how do you get yourself.

Kyle Pease: Back on the high what you say, to yourself, so you know I have my motivational quote that I say and um eventually I get back get back on the horse and in focus, on what we do.

Nadine Vogel: Okay, and so that's for you and what do you do to kick your brother in the pants.

Nadine Vogel: And keep him motivated during the race.

Brent Pease: Do you do you guys have an explicit rating on this podcast before he answers that. question.

Nadine Vogel: Nah, nah, go for it.

[laughter.]

Brent Pease: You know what.

Brent Pease: i'll just jump in real quick, I think one of the benefits of being brothers and being such good friends, is that we just both know how the other operates.

Brent Pease: Maybe even think about E-T right that there's this sixth sense of.

Brent Pease: Of of what the other needs and it's usually kyle figuring out what I need and there's times, where there's the calming voice and presence of a.

Brent Pease: loving, caring brother and there's other times, where he cracks the whip and he screams and yells and he pushes and does everything it is to get me going and.

Brent Pease: And you know that's usually in those really tough moments like think about climbing up a hill you know the bike when Kyle and I are on the bike, together with the weight of the bike it's about 365 pounds.

Brent Pease: So imagine pushing.

Brent Pease: 365 pounds up um up the side of a mountain.

Nadine Vogel: I can't imageine.

Brent Pease: It's excruciating we're going four or five miles an hour.

Brent Pease: And in those moments it's screaming and there's some four letter words that come out over and over again.

Brent Pease: But it's it's part of what we both love like we don't come away from those experiences going gosh I don't want to race with you anymore it's.

Brent Pease: Like you are awesome out there, you know you screamed and yelled and then that other time you you basically reached up and told me to you know hold your hand for a second.

Norma: [laughter.]

Brent Pease: It's just, it's just you figure it out and just like everything else.

Brent Pease: in life, especially for people with disabilities, that you figure it out, you know they don't always put the ramp at the front of the building, but you can always find a way to get into that building.

 

Norma: that's. right.

Nadine Vogel: You know that it, that is for sure you know Norma I both have adult daughters with disabilities, and so we you're speaking our language we totally get it.

Nadine Vogel: Um kyle anything you want to add to that before we go on a quick commercial break.

Kyle Pease: yeah obviouisly we do it differently before we go to commercial you know the cards that we dealt arenot ideal, but you have to play like a winner everyday so regardless of the challenge regardless of the spasms or whatever in may be, but you have to move forward.

Kyle Pease: And focus on the good things in your life and that's what I try to remember.

Kyle Pease: When we're out on the race course together.

Nadine Vogel: All right, well let's take a short commercial break for our listeners do not go anywhere, we are talking with kyle and brent pease and talking about their foundation and norma we'll be right back.

Norma: Okay.

Voiceover:  And now it's time for a commercial break.

[COMMERCIAL]
Have you attended a springboard Consulting event? Well, you should, we have the best events and our 2022 events are just under way. Firstly is the Brg Summit happening on Tuesday, April 26th, and then following that is Disability Matters. North America Conference and Awards that's happening Wednesday and Thursday, April, 27 and 28. Both events are being delivered by a live stream. If interested in attending, please visit www.consultspringboard.com for more information.

Voiceover:  And now back to our show.

 

Nadine Vogel: Hello everyone, this is nadine vogel i'm joined by co-host norma Stanley and we're back today to talk with Brent and Kyle Pease.

Nadine Vogel: You know, when we talk about disabled lives matter, I think you guys certainly could be the poster you know brothers.

Nadine Vogel: for for this, because I think that it's important to realize that you know disability is not a cause to support.

Nadine Vogel: That it's a I think kyle you said it earlier, you know it's a part of who you are it doesn't define you.

Nadine Vogel: Right, yes, it makes life more difficult for different things, but you go way beyond.

Nadine Vogel: And when I say way i'm way beyond so i'm wondering, and whoever wants to take this one on for those who maybe have not experienced either be in an iron man or have watched it can one of you share exactly what goes on to compete in an iron man all the components of it.

Kyle Pease: I like.

Kyle Pease: To. It's a 2.4 mile swim.

Kyle Pease: followed by a 112 mile bike.

Kyle Pease: and then followed by a 26.2 marathon.

Kyle Pease: So I do 114 miles 112 mile bike and the 2.4 mile swim.

Norma: So it's like three or four different. Competitive. 

Nadine Vogel: Right. Three different events right.

Norma: Okay wow.

Nadine Vogel: and and how long typically does this take you two to complete.

Kyle Pease: So no it could take more than one day.

Kyle Pease: so once it starts. you do not stop until you did it.

Kyle Pease: So normally brent and I take anywhere from 14 and a half to 15 hours.

Norma: Wow. 

Nadine Vogel: and and. You know it's not just the day of competition right, I mean I can't even imagine what the training is you do.

Norma: Right.

Nadine Vogel: To prepare for this do you want to give us a little insight into that grueling process.

Brent Pease: yeah so it's I mean look it's a lot um.

Brent Pease: So for an iron man it's you know 20 to 25 hours a week or it's kind of like the big volume which.

Brent Pease: You know doesn't happen till you're in the kind of the final 16 weeks or so, but you know generally i'm training 10 to 16 hours every week non stop you know around the clock year round.

Brent Pease: But that usually 10 to 12 weeks out from a race, we can make sure kyle's involved because, as we talked about earlier.

Brent Pease: it's a demand on his body physically to even though a lot of the physical, even though, when you look at it, it looks like i'm doing all the physical work it's not something kyle's body is acustomed to or even build for.

Brent Pease: And we have to have him ready, because to be out there for that long if you need him to be mentally present if he's not physically able to handle it.

Brent Pease: it's hard to stay in that in that mindset so it's it's a it's a non stop and it's a part time job for both of us, and I, and I.

Brent Pease: I don't say that as a burden, because we're very fortunate that we both work in a world in a in a in a profession that allows us to to serve people with disabilities, but also to serve each other and to be together and do all those things and we're really fortunate in that regard.

Norma: Beautiful.

Nadine Vogel: So brent let me ask. you know.

Nadine Vogel: Having having kyle as a brother, with a disability what has that just on a personal note taught you, has that changed you in in some way either as a husband a parent a brother, you know in any of those roles.

Brent Pease: I mean, I mean it's changed me and all of those roles, I mean, I think it had a profound impact on me as a as a young child.

Brent Pease: And it gave me compassion and patience that still live with me today, and all that I do it certainly helps with kyle and all of the athletes and families that we serve through the Kyle Pease Foundation in all the ways that we try to.

Brent Pease: enrich their life and their experiences and especially in sports, but as a parent and as a husband to be able to.

Brent Pease: step back and be patient and be compassionate instead of thinking solely about my needs are what I you know we all do it it's natural we're taking care of ourselves, but to understand caring for another human like that.

Brent Pease: i'm very blessed and incredibly fortunate that you know, having kyle as a brother gave me so many of those skill sets that I think are somebody would tell you that was if you were asking somebody else would say that you know those are some of the qualities that they admire that I possess.

Nadine Vogel: That's great. Thank you, so if we think about the kyle pease foundation what you know what's your obviously your multiple messages here, but you know what is it.

Nadine Vogel: But let's let's break it up, what is your message to others with a disability and then, what is your message to everyone else, as a result of the Foundation.

Kyle Pease: That that great great question, I think.

Kyle Pease: My message to all of our athletes that we serve. just just.

Kyle Pease: to remember that we all have our unique challenges that we face.

Kyle Pease: When they come to the kyle pease foundation when they come to a race, I really want them to forget about that eventhough it is a part of them. I want to.

Kyle Pease: make them feel comfortable and want them to know it's okay to be yourself, you don't.

Kyle Pease: Have to pretend to be anybody else, just be yourself. I think you know that goes with. you know it goes with inclusion because we fight for inclusion everyday of our lives.

Kyle Pease: To be. To be valued, you know to fell part of. to enrich others and to leave this place better than we saw it yesterday, and I think you know where we do that, then it's guide the winner for ourself.

Nadine Vogel: Right. Thank you.  And then, for you know the parents, the family, the other family members siblings anybody who then doesn't have a disability what's your message.

Kyle Pease: To kind of watch us.

Nadine Vogel: [laughter.]

Kyle Pease: It really it, be it be is to.

Kyle Pease: The way that we do life because we do do it differently. but we have a great we have a great time doing it. you.

Kyle Pease: know and then at the very end of the day, we all have one goal and that is to get to the finish line of the race. and I think that we give. I mean, you know that are. that we get by with a little help from our friends.

Kyle Pease: that what we do with the volunteers with. the parents.

Kyle Pease: You know, they don't help, but they do the critical work but brent does the physical work.

Kyle Pease: But I'm with him 100 percent.

Kyle Pease: I think that that's what we had to focus on that, we all need help and some more noticable than others, but we all need help. to reach out goals.

Nadine Vogel: And and I guess it's it's being comfortable asking for the help and then at some point being able to articulate what kind of help you need right because I think that's a process as well.

Nadine Vogel: And and for Brent what would you say what's your message that you know as as the brother of that you want to get out to folks who may be siblings of or parents of individuals with disabilities.

Brent Pease: say what my dad said to one of our first board members and that's that it's going to be okay.

Brent Pease: And I think so many times, you know when you experience that I mean I experienced at a very early age, I mean those are my earliest memories of kyle.

Brent Pease: And it's going to be okay it doesn't mean that it's going to always be easy or that it won't be hard and challenging at times but it's going to be okay.

Brent Pease: And and somebody like kyle or any of the athletes of the kyle pease foundation are living embodiments of that and and what they accomplished every single day of their lives.

Brent Pease: And it's going to be okay.

Nadine Vogel: Thank you. Thank you. and those involved with the foundation um are they from all over the world, all over the country geographically.

Nadine Vogel: How is that spread out.

Kyle Pease: Yeah so most of them are from, mid counties, but we do have people for Texas and Pennsylvania that come down and join us. so we do have a spread all over the country.

Kyle Pease: And everybody's, welcome to join us.

Nadine Vogel: Thaks great. Well, unfortunately, we are out of time, but what I really want to make sure that our listeners our audience knows how to get ahold of you.

Nadine Vogel: So either you know they want to join you in a race, they are disabled athlete and or they want to help fund, they want to fundraise for you guys. How should they get in touch with you.

Brent Pease: website is always a great place kylepeasefoundation.org.

Brent Pease: um. that's a good place to start that will connect you to all our social media channels. um there's a way to join us as a volunteer as an athlete.

Brent Pease: there's a way to sign up for our newsletter great get great updates on everything that we're doing we just sent out our bicycle kits today actually on our newsletter so you can order your sweet kyle piese foundation bike Jersey.

Nadine Vogel: Woo hoo.

Brent Pease: Which is. Very fashion forward with the big white shoulders, like all the cyclists are wearing today.

Nadine Vogel: I like that.

Brent Pease: But yeah I mean I would start with the website because that's got everything every possible different way to follow and or join our team.

Nadine Vogel: Excellent excellent.

Norma: Awesome.

Nadine Vogel: Well guys I can't say enough Thank you so much, I am just delighted to know more about you and what you're doing and share what you're doing with with the world I that's just me I want the world to know what you're doing and how amazing it is so thank you both very much.

Brent Pease:  Thank you.

Nadine Vogel: To our listeners, I know you enjoyed this as much as Norma I did, and we look forward to seeing you on another episode of disabled lives matter more than a podcast it's a movement.

Norma: Amen. Be blessed.

Norma: Everybody. We look forward to the next episode.

Nadine Vogel: Bye bye.

 

Closing comment:  [Music playing in background.] Thank you for listening to this week's episode of disabled lives matter. We look forward to seeing you next Thursday.  Have a great week!

Disclaimer: The views, information, or opinions expressed during the Disabled Lives Matter podcast series are solely those of the individuals involved and do not necessarily represent those of Springboard Global Enterprises, Springboard Productions, and its employees, contractors, subsidiaries, and affiliates.  The developers of the Disabled Lives Matter podcast are not responsible and do not verify for accuracy any of the information contained in the podcast series available for listening on the Podbean hosting site and/or any other associated hosting entity. The Primary purpose of this series is to educate and inform, and does not constitute disability, medical and/or other professional advice, and/or service(s). This podcast is available for private, non-commercial use only. Advertising incorporated into, in association with, or targeted toward the content of this podcast, without the express approval and knowledge of the Disabled Lives Matter's site developers is forbidden. You may not edit, modify, or redistribute this podcast.  The developers of the Disabled Lives Matter site assume no liability for any activities in connection with this podcast or for use of this podcast in connection with any other Website, Computer, and/or listening device.

S02-Ep07_Lu_and_Dale_Picard

S02-Ep07_Lu_and_Dale_Picard

March 3, 2022

Season 02, Episode 07
Co-Hosts: Nadine Vogel & Norma Stanley
Guest: Lu and Dale Picard

Intro: [Music playing in background] Disabled Lives Matter... here we go!

Voiceover: Hello and welcome to this week's episode of the Disabled Lives Matter Podcast.  Let's welcome co-hosts Nadine Vogel and Norma Stanley! 

Nadine Vogel: Hello everyone, this is nadine vogel one of your host of disabled lives matter more than just a podcast it's a movement, and I am joined, as always, by the fabulous norma Stanley my co host.

Norma: Hello everyone.  good to see you.

Nadine Vogel: yeah, I am very excited today, because we are also joined by Dale and Lu picard they are the founders of ECAD educated canines assisting with disabilities organization which was founded back in 1995.

Nadine Vogel: So welcome welcome welcome Dale and Lu and tell us about ECAD what what is it what does it do.

ECAD: ECAD trains breeds and trains dogs for people with physical disabilities, we have trained dogs to work with people with over 60 physical disabilities since it started and we actually have.

ECAD: 100 and approximately 150 dogs working out there today well as we speak, yes.

Nadine Vogel: wow.

Nadine Vogel: Now you said specifically.

Nadine Vogel: physical disabilities, so if someone you know, has other disability types that they need one of these dogs that's not your area of expertise correct.

ECAD: We don't do anything for hearing and we don't do anything for your eyes okay anything that has to do with a disability balancing issues traumatic brain injury ptsd are some of the.

ECAD: places where we place dogs with let me clarify it has to affect your arms and your legs.

ECAD: Okay early and then, if you're a veteran with ptsd on top of the physical disability, then we service, you are not at the position right now to service civilians with ptsd because, in order to do that, you have to have some advisory team 

Nadine Vogel: Right okay.

ECAD:  installed, but we have it for the veterans.

Nadine Vogel: Okay, that makes sense, so this is amazing so tell us where did the vision come from to start this.

ECAD: go ahead, so I always liked animals and I like baby things and I had my second daughter I couldn't have any babies anymore.

ECAD: So I needed baby things around and Dale got me little chicks first and that didn't really work the puppy thing that worked real well for me, and so we had puppies and just pet dogs, but then my father had a stroke two weeks.

ECAD: After he retired and I was quite upset about that you know my parents always talked about retiring going to Florida and doing, and they were saving their money for this, and they were holding out to do that, and he retired two weeks later, so.

ECAD: I got.

ECAD: I was old enough, I was in my 30s at the time and I had to do something to correct it in my own way.

Nadine Vogel: Right.

ECAD: I trained a dog and helped him.

Nadine Vogel: Oh. 

ECAD: I didn't know really what I was doing I just knew to help pull them up off a chair and stay with them when he was in a walker. give him his remote control, but I didn't have.

ECAD: The information behind me so Dale and I talked about it and I went out to California for six weeks and I worked with Bonnie Bergen she's.

ECAD: the guru of service dogs she's really the one who started it in the 70s and I trained with her for six weeks so, then I knew what tasks to teach and I knew what kind of dog what the personality of the dog should be.

ECAD: And that's really what I needed to know Dale needed to know we already knew how to run a business. We had those.

Nadine Vogel:  Got it.

ECAD: It was really like the details stuff the dog has to be able to turn a light switch on and off hold the door and hold an open, while you get in and out things like that.

Nadine Vogel: Right right okay oh wow. so that's awesome.

ECAD: Yeah. Then.

ECAD: He went out for six weeks, the following year, and then we never looked back, we just did it.

Nadine Vogel: Right, right. you know it's so it's so interesting you know norma and I had this conversation all the time that you know so many of the amazing things that are out there.

Nadine Vogel: Are because of our own personal experiences personal situations, and I think that, because of that.

Nadine Vogel: You know, it comes from the heart right, you know, like you said you're the business part you have this comes from the heart, we so so thank you for that um tell me what other certain breeds of dogs that you find are better suited for this or that you specifically work with.

ECAD: The industry uses primary primarily Labrador retrievers and golden retrievers, and the reason behind it is because those two.

ECAD: breeds of dogs were specifically bred to serve the person hunter right they're not really the one who went and found the prey they were the one after you shot the prey they went and got it and brought it back.

Nadine Vogel: Oh.

ECAD: Then, like a cocker spaniel Springer spaniel they found the bird pointed at you shot it then they brought it.

ECAD: You know, it was different so the golden retriever and Labrador retriever have been refined to a point where they're the best house dog, they want to serve all the time they say kind of puppy like most of their life so you can keep teaching and.

ECAD: We use primarily Labrador retrievers and golden retrievers for that.

Nadine Vogel: And may I ask how does a German shepherds factor into this because I'm so used to seeing shepherds, you know as part of this as well.

ECAD: The shepherds were more used by the guide dog schools for for your eyes.

ECAD: But even they are pulling back away from the German shepherd everybody's looking for a friendlier dog and more friendly.

ECAD: dog, so you can come down the street with a black lab it parts the sea if you come down the street with a German shepherd it parts the sea, but most people with disabilities don't appreciate parting the sea they like the communication they like the interaction.

ECAD: we're all looking for.

ECAD: a less intrusive dog out in public and more bring it in for you so you're interfacing with your public did your people on the street and for the Blind it works well, because the.

ECAD: German shepherd is a tell dog he tells you don't cross the street yet move. to the left.

ECAD: To the right and when you're blind you don't want people just coming up on you you've got to have a little verbal communication, so the shepherd works very well for them when you're in a wheelchair you kind of want that social contact. You want it, you know in that type of thing so.

Nadine Vogel: Right. and I think you know we were we were talking earlier, I know that you guys are based in Connecticut, but I believe you serve families in quite a large geographic area is that correct.

ECAD: yeah so we try to stay East of the Mississippi just for follow up care and make sure that it's not impossible for us to get to them or them to get to us because many physical disabilities progress as you get older, you might need that follow up care and we need to be there for that.

ECAD: But people move so right now we have dos in probably 26 of the 50 states, including Nevada including you know, on the west coast, but.

ECAD: it's all about it costs a lot of money to train the dogs and then you have to follow up on the life of the team so as a nonprofit we try to keep it in a manageable place.

Nadine Vogel: Right, right.

ECAD: So if I only have to drive three hours or you only have to drive three or four hours to come back that's a lot more manageable than having a fly six.

Nadine Vogel: Right absolutely so you know you mentioned follow up, can you explain to our audience, you know what is the process right so someone you know gets a dog like is there, like a you know, a one year plan a five year plan like How does that work start.

ECAD: Starts with the digging. starts with the application process.

Nadine Vogel: Okay.

ECAD: Okay, so they so they fill out an application is like an inquiry application okay send it to us, we look to see what is a disability, can we train a dog for that.

ECAD: Are you in our service area, do you have support behind you, in case something should happen to you, who will take care of your dog, so all of those are yes, yes, yes, and we send for part two.

ECAD: part two now you have to validate you have to have medical paperwork brought in to us sent to us, you need letters of reference for you need more details about you and then you come into a meeting and greet.

ECAD: You meet some of the dogs, we have you move around with them, but they're not the dogs you're going to get because these dogs are pretty much finished they're leaving soon, but it gives you a good idea of what to expect.

Nadine Vogel: Got it.

ECAD: And because we breed we're pretty much getting the same most consistent dog.

ECAD: Consistency.

Nadine Vogel: right which is probably really important.

ECAD: Very important to know as much as you can know about a dog.

Nadine Vogel: Right.

ECAD: And then and then so now, you did you meet and greet, then we have to fundraise the money to get you this dog, you have to participate in the fundraising part of it, people like to give to people they know so that and we have a fundraising coach that alone could take almost a year.

Norma: To raise the money for the dog.

Nadine Vogel: Wow.

Norma: How expensive, is it.

ECAD: It costs us about $50,000 per dog, to bring them from birth to death, and we have to follow up on the team until they're are no longer a team so.

Nadine Vogel: Wow.

ECAD: So if you have a dog at two, and now the dog your dog lives till he's 12 I have followed up ion you 10 times minimally.

Nadine Vogel: Got it.

ECAD: That's annually.

ECAD: That's assuming your disability didn't get worse.

ECAD: Correct.

Nadine Vogel: And followed up with like a phone call a communication an email or actually getting together.

ECAD: We could see you in person.

ECAD: It depends where you are now maybe I saw you three times, once a year for three years, and now you move to Florida and you've been doing really well okay we'll send you a survey we call you up, we asked for the vet records.

ECAD: They have to send us vet records every year on the dog we watch that as well, and then, so we got all that they come for training they stay with us for 13 days and we lodge them and we train them.

ECAD: More than eighty hours in those two weeks we bring them on field trips and on field trips are going to the grocery store the mall something at night.

ECAD: Either a restaurant and a movie or something we're doing something at night, so you know how to handle the dog in the evening we're going somewhere where there's a lot of kids so you know how to handle that.

ECAD: You know grocery store on a Saturday morning anything so I like to push them one one step past the line of their safety.

Nadine Vogel: Got it.

ECAD: If they're saying Oh, I never go grocery shopping on a Saturday morning no way I only go on a Tuesday or Wednesday we'll start on a Friday and then well get to Saturday. Before.

ECAD: You go home. Just so they know.

ECAD: They can do it, you know.

Nadine Vogel: Right, right.

ECAD: We do that for 13 days, and then we follow up on them with the next six weeks weekly they have what we call after action reports.

ECAD: And it's all computerized but they have to practice every day with their dog on certain things that they need, and they report weekly we reply weekly.

ECAD: And if there's anything going on, then we get a phone call will have them come in, it could be something as simple as oh I didn't realize you had rabbits and now the dogs too interested in the rabbits.

ECAD: So I can't really tell you about how to fix it, then we might have to visit you and show how.

Nadine Vogel: Got it. Got it. wow.

ECAD: And then, 

Nadine Vogel: this is amazing.

Norma: It's very detailed.

ECAD: It's very detailed and it's a piece of medical equipment and if you have multiple sclerosis, or you have traumatic brain injury or you have arthritis as you age these things progressively get worse. That's why.

Nadine Vogel: Absolutely. That is for sure.

ECAD: The dog has to get stronger then and that's not the time for me to go back and say well that's going to cost you $1,000, and this is going to cost you seven or eight.

Nadine Vogel: Right.

ECAD: That money that you paid and we raised so we asked the clients to help raise half of it we raise half of it as them to help us raise the other half, and that pretty much takes care of you for the life of the team as far as training brush up classes counseling.

Nadine Vogel: Right. Okay, well, we need to go take a commercial break, because we are I could I don't want to break I just want to keep.

Nadine Vogel: Going by so interesting let's take a quick commercial break and then we'll come back so for our listeners don't go anywhere Norma I will be right back with disabled lives matter stay tuned.

Voiceover:  And now it's time for a commercial break.

[COMMERCIAL]
Have you attended a springboard Consulting event? Well, you should, we have the best events and our 2022 events are just under way. Firstly is the Brg Summit happening on Tuesday, April 26th, and then following that is Disability Matters. North America Conference and Awards that's happening Wednesday and Thursday, April, 27 and 28. Both events are being delivered by a live stream. If interested in attending, please visit www.consultspringboard.com for more information.

Voiceover:  And now back to our show.

 

Nadine Vogel: Hello everyone and welcome back to today's episode of disabled lives matter Norma and I are interviewing dale and lu picard of ECAD this has been a fascinating discussion.

Nadine Vogel: And, and you know, on a commercial break, we were just having a little conversation I just want to share with everyone what they told us, which is that.

Nadine Vogel: You know from it's because you breed the dog you train the dog right all of this, that you know, by the time someone's really paired up if you've already put about 24 months into this one dog two year, which is amazing, and I think you said that equates to about 1500 hours of training. 

Nadine Vogel: Is that correct.

ECAD: Yep, it include the socialization and the grooming and the training and all that yes.

Nadine Vogel: I know some kids who need that.

Nadine Vogel: Could you transition a little bit.

ECAD: Most most people that have children and leave us ask us to train their children.

Nadine Vogel: See. I knew it I knew it.

Nadine Vogel: So let me ask you a question now that we said children what what's the typical age or age range of your client.

ECAD: Well, depends, so we have three programs, we have canine magic that for young kids with autism.

Nadine Vogel: Okay.

ECAD: And so, then we have open doors that's for civilians with physical mobility, disabilities and they could be children or adults.

Nadine Vogel: Okay.

ECAD: And then you have your project heal that's really focused on veterans veterans with physical disabilities people with traumatic injuries things like that.

Nadine Vogel: Got it.

ECAD: So for canine magic the child needs to be up and walking and pretty stable with himself, but he could be three or four years old.

ECAD: Because. now.

ECAD: The parent is the facilitator.

Nadine Vogel: Right.

ECAD: And the dog acts as the anchor for that child, so the biggest issue with children with autism is their parents don't want to let go of their hand.

ECAD: and any child wants to investigate the world regardless, and they get frustrated, but they can't let go and they don't have a safety valve so.

ECAD: Being tethered to the dog now you have four feet, you can get away mom or dad is tethered to the dog now you got about eight feet, that they can play around in.

Nadine Vogel: That's very cool.

ECAD: and move in that it doesn't if the child jumps up and down or or you know wanders the dog will just kind of go back and we'll just bring them back kind of like a u turn back over to. us.

Norma: Nice. Love that.

Nadine Vogel: Yeah. that's fabulous so.

Nadine Vogel: I think, at one point, you had said, or I heard that is like, as many as a no is it 80 or 90 different commands right that these dogs are taught.

Nadine Vogel: But hearing how you yeah the segment of services that you offer are the commands, I guess, I want to say customized by disability type or by age or How does that work.

ECAD: Well, so we have is kind of like the alphabet there's only 26 letters.

ECAD: But you can make millions and millions of words right.

Nadine Vogel: Okay.

ECAD: So if i'm going to I teach all the dogs heal inside and you know wait and.

ECAD: Basic kind of obedience manners type of things and then.

ECAD: Almost all the dogs, will be able to retrieve will be able to tug but now, where do you want to use it, so if I have a child, with autism.

ECAD: I might want the dog to retrieve toys and bring it back and drop it for him or her right if I want them to tug like we had it we just did a class and kids.

ECAD: And the boy the boy wanted sit on it on an office chair and the dog tugged him, like it was a ride, he was just tugging him all over the training Center.

ECAD: But they were having a really good time he was having he was getting stimulation what he needed to have mom gets to watch and laugh, and not have to run around pushing him.   And the dog.

Nadine Vogel: Right.

ECAD: Right. But, but somebody with M-S will need that dog to tug maybe the sock off their foot or tug open a refrigerator tug open a door right.

Nadine Vogel: Right.

ECAD: If you're a veteran with ptsd you forget to take your medication we teach the dogs a medical reminder and the dog tugs on them, they have a little lanyard and the dog tugs them over to wherever you won't stop until you go and get him a cookie because that's what he thinks and noises about.

Norma: Oh.

ECAD: That went on, I get a cookie let's go.  You know.

Nadine Vogel: I like that.

ECAD: so that we never want the dog to stress out.

Nadine Vogel: Right.

ECAD: So even you know the child is having a meltdown, we want the dog, to go in and look for a treat so.

ECAD: If so.

ECAD: If we fall on the floor, we start pretending we're crying and and having a little fit we might keep a treat under our chin and he got to come and find it.

Nadine Vogel: Got it.

ECAD: And then we give it to them later on, he has to wait longer to get it.

Nadine Vogel: So.

ECAD: The understanding and not every dog can do everybody's job like some dogs can't do little kids because they do.

ECAD: too excited they might start pawing at their head, you know but that dog might be very good for somebody who has sleep apnea.

ECAD: And needs to jump up an alert for a sound and go get help. you know go get help. 

ECAD: it's not only teaching all the commands and the functions to the dog it's also matching the dog's personality to the right personality of the human that's that's where she shines.

ECAD: placing I've seen these things. we'll have five 6000 of training class and we're all thinking is going to be going this way and.

ECAD: When she doesn't go the way you actually thought.

Nadine Vogel: Right.

ECAD: You have to fit the best personality of the dog, with the personality of the person.

Nadine Vogel: Right right so you're also a matchmaker.

ECAD: that's my art.

Nadine Vogel: That is.

ECAD: that's the art of training service dogs it's not the training, because you can train a dog, you have to love them but you can train them it's matching that dog with that person that you don't know very well yet maybe I met them for three hours.

Nadine Vogel: Right.

ECAD: And then, when they come in for team. training I spend four days watching them move and doing stuff and and listening to what they're saying to the dog, you know.

Nadine Vogel: Things like if the.

ECAD: If you have a veteran calling his dog baby and sweetheart and I can't oh my God I can't stand you make me so happy that's a good flag, if you say things like please don't be a pest today, please listen to me i'm like yeah not a good match.

Nadine Vogel: Right right right norma, I think you had a question.

Norma: yeah I just love passion that you guys, have you been doing this 25 years, do you ever get tired of it, it doesn't look like it.

ECAD: No. [Laughter.]

ECAD: The board is asking us when we were retiring I just turned 65 last year, I said, well, not for another five years, maybe longer.

Nadine Vogel: No, this is this is great, so let me ask you this.

Nadine Vogel: What would you say is important new information to educate or guide health professionals, about the use of dogs like this.

ECAD: So we're doing something with pace University on that right now.

 

Nadine Vogel: Oh.

ECAD: About three years I go so with Joanne singleton she's a professor at Pace University for palliative care.

ECAD: and so her masters students so we're we did a whole thing on the do's and don'ts so warily what you need to do is you need to remember that that person has that dog is not for entertaining of you.

ECAD: it's because it's a necessity, like if it was their wheelchair, nobody would got and pet a wheelchair, nobody would be. oh muah-muah. you're.

ECAD: So cute you know.

ECAD: So you kind of have to ignore it.

Nadine Vogel: But talk to the person.

ECAD: Just talk to the person not not so much the dog and I understand golden's and labs are just so cute.

Norma: They're just adorable.

Nadine Vogel: They are. You just want to. um.

[Laughter.]

ECAD: So I would say that remember the person and remember that they need it it's not an accessory it's a necessity.

Nadine Vogel: Right it's a benefit it's a health benefit like anything else.

ECAD: Yes.

Nadine Vogel: ah so so so let. me ask something that's probably a little more controversial I always like to have some question, right.  There has been a big push in recent years about emotional support dogs and that emotional support dogs or dislike service dogs and i'm wondering. if you could comment on that.

ECAD: I only have one thing to say, the emotional.

ECAD: Support dog must have received formal training, they have to be trained to do what they're doing for you, they can't just be like a dog sitting on your lap is not a task.

ECAD: So, and we have come across people who have emotional support dogs with the dog hates being where he is you know the lady who has a little dog on her lap at the airport and our dog all he does is growl all while waiting to get on the plane is not having a good time.

Nadine Vogel: Yes.

ECAD: Your not supporting his emotion or her emotion right.

Nadine Vogel: Right.

ECAD: So it's really about the training and keeping the public safe, even if you're in a wheelchair.

ECAD: And you say this is my service dog if he's not behaving well if he's a nuisance or he's a risk anybody can ask them to leave and it's legal to do that.

Nadine Vogel: Right. right. 

ECAD: It's about the training, you have to be the dog have to receive training to mitigate your disability.

Nadine Vogel: When people say well my emotional support dog and a service dog, and the same thing.

ECAD: They are not.

Nadine Vogel: What would you say to that.

ECAD: Service dogs are task orientated do train to specifically give task to help that person mitigate their disability okay so we're mitigating your disability, with the task you can't open a door, so the dog did it for you, you can't pick up something on the floor, so the dog it for you.

Nadine Vogel: Right.

ECAD: You know veterans with ptsd you can't go in somewhere, because if you go in there and a light bla flickers off that could set you into a trigger the dog knows what to do to stop you the dog knows what to do to comfort you and bring you back ground you back.

Norma: Wow.

ECAD: For emotional support if that's what you need, then you need to teach that train that dog to support you emotionally, so you need to know what it can't just be when he's with me, I feel good that's not they're not gonna recognize that. 

Nadine Vogel: Right right. I love it Thank you.

Norma: Okay.

Nadine Vogel: Because there's lots of controversy around. it.

ECAD: We we require everyone to get our service dog to get a prescription from the doctor.

Nadine Vogel: Okay.

ECAD: So if you don't have a disability if you're not taking any kind of medication you're not seeing a doctor, and you're not seeing a doctor then you can't qualify on our program to receive a service dog.

Nadine Vogel: Right. Good, good, good and good.

Nadine Vogel: So um.

Nadine Vogel: Thinking about rosie the courthouse dog, so, is there a story behind rosie.

ECAD: rosie rosie was my personal dog she was a breeding female for us, she had approximately 40 some odd puppies but rosie was on my side for the whole her whole life, she was born in my hands and she died in my hands.

Nadine Vogel: Awe.

Norma: Wow.

ECAD: We worked back then we worked in residential treatment schools your children green chimney. green chimneys in brewster is where I worked for 15 years and rosie rosie.

ECAD: Was with me all the time when we really start working at green chimneys I retired rosie and she wasn't happy.

ECAD: And then one day I got a phone call from a group home up in poughkeepsie New York and the gentleman says.

ECAD: Would you have a dog that could provide one of my clients that's going to court to testify against her father that's raped her that could help her testify in court to stay calm and testify in court, I said I got exactly the dog. you need.

Norma: Wow.

Nadine Vogel: emotional support.

ECAD: It was emotional support right, so the dog had to help this child stay calm in court.

ECAD: had to be unintrusive in court, so when the the the girl testified he took all the jurers out of the courthouse court room.

ECAD: brought her the dog and her in situated the dog so they couldn't see him in the witness stand, so they could see the dog then brought the jury back in, and then they they started and she was approximately on the Chair, I believe, four or five hours.

Norma: wow.

ECAD: in question and the answer was very stressed out the attorneys were very demanding and pointing fingers at her and she froze on the Chair.

ECAD: When she froze on the chair is when rosie woke up, and this is the reporter sitting on the other side of the Court room writing this said the dog woke up, the dog sat.

ECAD: The dog put its nose underneath the girl's arm she had her arm on the armrest and as they were.

ECAD: posing the question she was just getting a little nudge a little funny she gave this big nudge in the girl's hand came up and knew when the finger came down it stopped at her father and pointed out the person had violated her.

Norma: Wow.

ECAD: got him convicted That was the first case in New York, we had to go had approval from every judge every person that works that training.

ECAD: Six weeks eight weeks, we had to let her leave us and stay in poughkeepsie so So when I went to the group home to introduce them to rosie.

ECAD: I brought a bag of food with me and I never met these people I drove up to poughkeepsie from dobbs ferry I had her and a bag of 40 pound bag of food in the back of my car, but I knew she wasn't coming back home.

ECAD: And I met the team, the team was satisfactory and I left her there.

ECAD: And then I met the girl later on, I had not met the girl yet so rosie stay there for six weeks i've just got a weekend here in a weekend there I go up and get her because I wanted her too.

Nadine Vogel: Sure.

Norma: Yeah.

ECAD: And then it was time to go to court and the dog and they were afraid of that the dog was not going to settle in.

ECAD: So we set up a fake.

ECAD: A jury box.

ECAD: And she came in with us because it real tight she didn't like tight spaces and we set up a fake one with a chair and, from time to time would have children or people sitting in the Chair, we just kept bringing the size tighter and tighter and.

ECAD: She wasn't reacting in a more, and then we say okay she's ready to go back we sent her back.

ECAD: right time for the Court date she had to have training to.

Nadine Vogel: Sure, no absolutely that's amazing Thank you.

ECAD: She was 11-12 years old, when she did that.

Norma: yeah.

Norma: Then she was a senior yeah and.

Norma: You still feel the pain of.

ECAD: They post her picture on Facebook all the time, I see her picture I start crying like a baby.

Nadine Vogel: Awe. Well she was your baby right.

ECAD: My job at ECAD is not only the executive director.

ECAD: i'm also the person that delivers all the babies yeah.

ECAD: I have a personal attachment every single one of these puppies.

ECAD: I gave him all life they're all born in my hands Okay, then i'm sometimes lucky enough to keep one of them with me.

ECAD: And then. The others graduate and move on.

Norma: Awesome.

Nadine Vogel: So. Let me, let me ask you this as we're just about out of time, unfortunately i'm is it if you can think of one thing is there anything that I haven't asked that you want people to know about ECAD.

ECAD: Just that we're here to serve the people with disabilities and just guys.

ECAD: You are the clients never forget that you're the consumer you're the clients you're not the charity you're not ECAD is the charity you're the client you're the consumer.

ECAD: And, and I always believe that when we started that's why we have the the client help us raise the money, because if you helped us raise $25,000 you have some expectations of us and you have some demands of us and you're not about to be quiet, if you want them and.

Nadine Vogel: If folks want to get in touch with you, either because they want to give you money, which should be a good thing.

ECAD:  That's a great thing.

Nadine Vogel: that's a great thing right or they need the surveys, or anything, what would be the best way to reach you guys.

ECAD: They can reach us at ECAD1.org and go on our website and we have a very nice website, they have videos they can watch.

ECAD: They have. Patient application is there, so that would be a way to get ahold of us, or they can call at 860-489-6550 and ask to talk to dale, carrie, Lu we're all Picards.

Nadine Vogel: Excellent Norma you want anything else you'd like to add.

Norma: No, I love it, I know, thank you for what you do i'm a big fan of golden retrievers and Labrador so thank you and you know i'm looking forward to learning more about your organization, if my daughter ever needs a service dog.

Nadine Vogel: Absolutely and and my older daughter does have one, so I totally understand what you all do and are so appreciate from the bottom of my heart, so thank you.

Nadine Vogel: And to our listeners, I know that you are going to support ECAD so reach out to them, let them know how you can help or if you need their help, and we will see you on another episode of disabled lives matter. norma.

Norma: Thank you, be blessed everybody.

Nadine Vogel: bye everybody.

Norma: bye bye.

Closing comment:  [Music playing in background.] Thank you for listening to this week's episode of disabled lives matter. We look forward to seeing you next Thursday.  Have a great week!

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