Disabled Lives Matter
S1-Ep31_Erica_Hawkins

S1-Ep31_Erica_Hawkins

September 30, 2021

Disabled Lives Matter
Season 1, Episode 31
Co-Hosts: Nadine Vogel & Norma Stanley
Guest: Erica Hawkins

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 with co-hosts Nadine Vogel and Norma Stanley… yay!

Nadine Vogel: Hello Hello everyone, this is nadine vogel and I am joined by the fabulous norma Stanley and norma you want to say hello to everybody.

NORMA STANLEY: Hello everyone it's good to be back with disabled lives matter.

Nadine Vogel: yep and together we are your hosts of what is not just a podcast but a movement and today the woman who is going to help us with this movement is Erica Hawkins Erica welcome to the show.

Autumn's Gift Respite Care: Thank you for having me nadine.

Nadine Vogel: Absolutely, so now you have if I if I know correctly you're a special needs mom like Norma and myself and your daughter has autism.

Autumn's Gift Respite Care: Yes, so autum does have autism um in addition to everything else that kind of goes along with that gamut.

Autumn's Gift Respite Care: So the ADHD and the sensory processing so yeah.

Nadine Vogel: And how old is autumn.

Autumn's Gift Respite Care: Autum is 14 now.

Nadine Vogel: Oh okay, so that's always a interesting age whether they have special needs or not.

Autumn's Gift Respite Care: Absolutely absolutely and I think that you know of course you and norma know that once they hit that age is just like you know typical or neurotypical behaviors and then you see their their own personality and behaviors coming through so it's very interesting.

Nadine Vogel: You know, I've told everyone that you know teenagers and especially teenage girls, whether they have disabilities or not they definitely have special needs.

Autumn's Gift Respite Care: Yes, I agree, I agree.

Nadine Vogel: And we've all been there ourselves so we know.

NORMA STANLEY: Absolutely.

Nadine Vogel: norma you know had brought you to to our attention because of autum's gift and I believe you founded this it's a 501 C three i'm a metro Atlanta, can you tell us a little bit more about what autum's gift is.

Autumn's Gift Respite Care: So autum's gift is a tailored respite.

Autumn's Gift Respite Care: For families that have our loved ones with various disabilities and we've really focused on customizing our programs we were founded back in 2009 we had very gracious partners.

Autumn's Gift Respite Care: Who kind of just took us on, and let us kind of fell through things and i'm going to figure out how to develop the what what we feel is the best respite program definitely in the southeastern region.

Nadine Vogel: Okay, well, I, I know that respite is really, really important.

Nadine Vogel: You know and it's it's one of those things where parents, especially of younger children.

Nadine Vogel: They don't even know how to begin to take care of themselves because they're so focused on taking care of the kids.

Nadine Vogel: Right and then norma you know, for you as a single mom at this point, I mean even harder right so so let's talk about how we define respite you know what are those services How do people find out about it let's just start with what the services are.

Autumn's Gift Respite Care: yeah so fortunate, you know for myself, I am married, but the struggles are still the same you know with our families, it really doesn't matter, because what ends up happening is.

Autumn's Gift Respite Care: You know the load of caring for that child is really handled by you know more so, one of the parents versus the other so yeah so i'm sorry nadine what's your question again.

Nadine Vogel: Well, just let them talk about when we say respite what do we mean by that what kind of services that you're providing.

Autumn's Gift Respite Care: yeah so um our respite services are twofold so those services can be delivered.

Autumn's Gift Respite Care: Within individualized basis or in a group setting we prefer group settings because our idea or our philosophy of respite is not only the character giver having a break from their loved one, but also the love when I have enough having a break as well.

Autumn's Gift Respite Care: So with That being the case.

Autumn's Gift Respite Care: We really like to focus on those small group settings and those small ratio, so that we can do different things like hit them out into the Community.

Autumn's Gift Respite Care: and get them out on the Atlanta belt line and go for walks take them to museums um just different things, and within those small groups we run on a membership basis only.

Autumn's Gift Respite Care: So with That being the case, they're always with the same people, so what we've seen.

Autumn's Gift Respite Care: With our group is that it has given them an opportunity just kind of form, builds long lasting friendships and you know that usually people you know, naturally.

Autumn's Gift Respite Care: You know form those and they're just kind of out having fun within our Community, we need a little bit more assistance with doing that right, so what we found is that.

Autumn's Gift Respite Care: By specializing in our programs, making it a membership basis, only then we're able to really continue to focus on those small groups focus on having fun, while the caretaker is having a great as well as the loved one.

Nadine Vogel: So so Okay, so when we have the respite you know, the respite is it for like an hour is it for a day or a weekend How does that work.

Autumn's Gift Respite Care: yeah so our respite programs are four to seven hours long and that's for the groups, as well as for the individualized programs, um so, and really with our individualized programs it's tailored.

Autumn's Gift Respite Care: to fit the needs of the families so some families have our services on both Saturday and Sunday and some of them have them maybe a Wednesday.

Autumn's Gift Respite Care: So that's usually how our programs fall um now we do also offer a retreat to both our adults and our she's invited program, and so they went this past year to watercolor Florida for about five days um.

Autumn's Gift Respite Care: yeah so they absolutely love 30-A, of course, it was.

Autumn's Gift Respite Care: A group of approximately six, the ratio to staff, it was about four staff, plus myself and another, head of the program was there in the city, so that we can help out as needed so that's given them the opportunity to get away with friends.

Autumn's Gift Respite Care: enjoy you know, things like go to the beach go to the pool they went out to dinner to play just to do different things, and have those overnight well, while the parents go ahead and take a break during the same time.

NORMA STANLEY: love that love that.

NORMA STANLEY: You know, I was.

NORMA STANLEY: One of the things that I really wanted to one of the reason I wanted you to kind of be on the show was because that is such a challenging and and such an important thing when you're leaving a child, with.

NORMA STANLEY: Somebody who's caring for them and it's not you, you want to know that you're going to come back and find your child Okay, there was a  story that just bothered me just last week about a young lady who has cerebral palsy who's was with a caregiver.

NORMA STANLEY: And who died.

NORMA STANLEY: In the car the caregiver left her there for five hours.

Nadine Vogel: Oh, my God.

NORMA STANLEY: And left, so I just wanted to kind of get an idea because I just think it happens, too often, for our children.

NORMA STANLEY: It happens with a lot Children these days I don't understand it, but particularly for you know vulnerable populations like children disabilities it's happening more and more, and I just want to understand.

NORMA STANLEY: What the screening processes of hiring people who is taking taking care of children who can I talk to themselves and who can't help themselves, she obviously couldn't unlock the car.

NORMA STANLEY: You know that's why she didn't take her with her, I don't know, but those are kind of things that really concerned me and I was wondering if you could shed some light on the screening processes.

NORMA STANLEY: To you know when you when you're making sure that your people who are taking care of our children are handled and cared for properly.

Autumn's Gift Respite Care: And qualify yeah.

NORMA STANLEY: Definitely qualified.

Autumn's Gift Respite Care: yeah so that's that's the lesson that we learned back in 2000.

Autumn's Gift Respite Care: And when we first started when we first started, of course, you know our mission was respite and we wanted to you know have volunteers and.

Autumn's Gift Respite Care: offer this extended date service to families, but we quickly found that that really didn't work because you know volunteers, they you know we're thankful for them, of course, our Community is but.

Autumn's Gift Respite Care: um they would come and go she's had and they weren't as committed as we would like, so what we did was.

Autumn's Gift Respite Care: We started a screening process so once a person is asked to interview with autum's gift the interviewing process to face.

Autumn's Gift Respite Care: So it's pretty rigorous each phase is about an hour and that's before we even meet them in person, and so we usually do two zoom.

Autumn's Gift Respite Care: Meetings with them one on myself than one with whomever will be their lead we meet them at our campus.

Autumn's Gift Respite Care: kind of just spend time with them and then we invited them to come back again so they could spend a day with our participants, so that we can just see.

Autumn's Gift Respite Care: How, you know just kind of what their flow is what their natural feel is for the community and I always to learn, please I can't teach you compassion.

Autumn's Gift Respite Care: But one great thing about our children is that they let you know right away, whether or not they're feeling a person or not, so why before they're even higher, you know they they do a couple of those screenings as well, so that we can just kind of get a feel for them.

Autumn's Gift Respite Care: In addition to that, once that phase is done we've been introduced them to.

Autumn's Gift Respite Care: It is for an individual client we introduce them to the family and allow the family to meet them and allow them to spend some time in their home um so our process is very.

Autumn's Gift Respite Care: Rigorous, our process is time consuming it's not just the kind of job that you can jump into, of course, we do the background checks and the drug screen and things of that sort, but we also take it a step further and we.

Autumn's Gift Respite Care: make sure that persons are going to be with us for a long period of time, so with That being the case, we have their pay even structured in a way that you have to give notice Okay, so you can't just.

Autumn's Gift Respite Care: fall in the company, you know work with the family, get a check and go um so we make it so that you know they have to give us up 45 day or we're pulling back our referrals.

Autumn's Gift Respite Care: Just kind of things of that sort, in addition to that, we believe in transparency for our families, so we do operate on an APP so when our staff members are our with our small groups or with our individuals.

Autumn's Gift Respite Care: Our parents are within that timeframe receiving live pictures live videos live feedback of what exactly is going on with their loved one exactly what activities they're they're engaging in because there's no better person than the parent.

Autumn's Gift Respite Care: That can tell whether or not their loved one is genuinely having fun and that's what our focus is fun so again, we want them to have fun and have a break, but we want our families to have a guilt free break too so with the with the.

Autumn's Gift Respite Care: The zoom meetings initially the interviewing process inperson and the shadowing the interviewing with the families and then that transparency.

Autumn's Gift Respite Care: That is mandatory throughout the day once they're employed with.

Autumn's Gift Respite Care: US is kind of you know it all goes into our game of helping to keep them safe.

Autumn's Gift Respite Care: On and I know it's a lot, you know and respite is very expensive I worked in the field extensively before autumn's gift so I get it.

Autumn's Gift Respite Care: And I get that one to one can be very expensive, but I think it has just helped that i'm a mom and I know exactly you know I feel I knew exactly what our community needs what our children need that was able to put together a program that was able to treat them all, like they're mine and.

Autumn's Gift Respite Care: You know, hold everyone accountable, who comes in.

Autumn's Gift Respite Care: Contact with them.

Nadine Vogel: that's great, so we are at a point we just have to take a short break.

Nadine Vogel: For our listeners stay tuned don't go anywhere we'll be back in just a minute with disabled lives matter.

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: Alright, everybody, this is nadine vogel and I am back with norma Stanley and together we are co hosting disabled lives matter.

Nadine Vogel: We are speaking today with Erica Hawkins who's talking with us about autumn's let me see what let me get the right name autum's gift, which is this just this fabulous service for respite and I can tell you norma you and i've talked about this right as special needs parents.

NORMA STANLEY:  Yeah.

Nadine Vogel: Respite respite respite capital R if you don't have the family right and friends and folks that can help, this is the way to do it and Erica it sounds like you're doing an amazing job with this organization.

Autumn's Gift Respite Care: Thank you, thank you nadine.

Nadine Vogel: Just tell us a little bit about the disability types that you serve and the ages, that you serve.

Autumn's Gift Respite Care: Yeah, so the disability types that we service um pretty much vart and we feel like we're capable to and due to our screening processes were capable to take care of pretty much anyone who comes to us.

Autumn's Gift Respite Care: Um not so much medically fragile I think that's a different level of care that we're able to to give because we are a very active Program.

Autumn's Gift Respite Care: But, as for the ages you'll see on our website that our programs actually range from age three.

Autumn's Gift Respite Care: Throughout adulthood, and the three year olds that program is every moment counts it's about three to six what I found as a mom is that when autum was at that tender age, and we really need it.

Autumn's Gift Respite Care: Daycare programs for her inclusivity and it was not fair Okay, and so, for us it was like hey let's take her to the playground let's let's get a membership at the Y so while we're working out she can go into the kids room, because every single moment counted as.

Nadine Vogel: Early. intervention.

Autumn's Gift Respite Care: It is it is and we had to kind of you know find a way, so, aside from the every moment counts, we didn't go up into.

Autumn's Gift Respite Care: Our teams and adolescence um so we have our signature respite program and those programs and they're able to get out into the Community, we may have art therapist come in for the day music therapists.

Autumn's Gift Respite Care: And they do cooking they do sewing so much just a variety of different activities, and then we have the she's invited program which allows our girls.

Autumn's Gift Respite Care: um usually our girls are you know considered neuro diverse to come together and just help to bond and form those groups and things those little social groups that they will need.

Autumn's Gift Respite Care: And then we have our adults for our social experience and really with our adults.

Autumn's Gift Respite Care: They focus on the thing which is this expanding on those relationships that they have they do in Community activities Monday through Friday.

Autumn's Gift Respite Care: On they also have programs and things on Saturdays where they go to different outings like maybe to a braves game and um fine dining we're really like to let them kind of request and tailor their own programs.

Autumn's Gift Respite Care: or just provide us with a list of things that they want to do and share with each other so so yeah so autum's gifte has something for everyone.

Nadine Vogel: And I guess if someone does have medical needs, they could bring their own nurse or someone with them as part of the Program.

Autumn's Gift Respite Care: Absolutely, and you know what I had.

Autumn's Gift Respite Care: In that would be fantastic we're totally open to that and that's something that has helped to make us unique to is because we've even gone as far as is to have para professionals and things that come into our Program.

Autumn's Gift Respite Care: If a family really wanted to be there, so that they can train us how to work with that particular that particular child, so that we can you know just kind of streamline thing so yeah.

Nadine Vogel: So how about you, this is a $50 million question, I think, norma, you and I talked about this, we you know every interview right it is covid the dreaded covid right how has that impacted what you've been able to do.

Autumn's Gift Respite Care: yeah so covid.

Autumn's Gift Respite Care: yeah. the dreaded covid.

Autumn's Gift Respite Care: And what impact it has had you know for a while we had to stop our services, we were, and you know.

Autumn's Gift Respite Care: co-listing with different places and having our different programs set up as a different locations that we felt our participants could go into and.

Autumn's Gift Respite Care: meet their needs, environmentally but we had to stop that and that really and you know just kind of stifled our movement, a bit because we had to refigure things we had to just go back to the drawing board figure out.

Autumn's Gift Respite Care: How to make it work and so that's when we started doing a lot of different things in community, but we were blessed to meet Andrea Gordon.

Autumn's Gift Respite Care: Andrea Gordon is hosting an event called fashion meets food and, within that event, it will benefit autum's gift in our respite programs for families, so that.

Autumn's Gift Respite Care: The proceeds are going to go towards helping us to move into our own location so we're looking at doing that very soon, in October, so.

Autumn's Gift Respite Care: we're very thankful to Gordon and the chef for putting on this event for us and and it's going to be an annual event, and I know that it's going to be fun and will raise lots of money for respite i'm.

Nadine Vogel: Raising money for respite they know you said that you work on membership So who is it like sliding scale based on how people can afford to pay and then this becomes you know this fills the gap or How does that work.

Autumn's Gift Respite Care: yeah so the way that the money's work out is, we have one set fee, but all of the money raised.

Autumn's Gift Respite Care: All of the monies raised for autumns gift go right back into the scholarships so because that's where the greatest need, is because.

Autumn's Gift Respite Care: For us to provide the level of care that we do and a have Apps and creme de la creme Staff and things of that sort, we want to maintain those things, and that quality of care and so all of those things go back into the scholarship pod which fall back into our staff.

Nadine Vogel: got it. Well that makes a lot of sense.

Autumn's Gift Respite Care: So all of our families have. An opportunity to partake yeah.

Nadine Vogel:  Well that was great Well, I can tell you, you know norma you and I, and we are probably the biggest believers in respite right.

Nadine Vogel: And in not only the kids meaning of but even more so for the parents so Erica I just want to thank you so much for all that you do for autum's gift I believe it's a gift that you're bringing to everyone.

Nadine Vogel: And so appreciative that you came on our show today.

Autumn's Gift Respite Care: Thank you all so much for having me and for allowing me to speak with your families about respite. yay.

Nadine Vogel: Absolutely so norma another great show.

NORMA STANLEY: Yes, it was yes, it was a lot of great information shared today, so thank you again.

NORMA STANLEY: Erica and looking forward to bringing lots more great guests to disabled matter as the week's pass and they're passing very quickly as i'm looking into the year Lord help.

Nadine Vogel: Alright, everyone will see you again soon bye bye.

Autumn's Gift Respite Care: Bye.

NORMA STANLEY: Everyone have a blessed one, 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.

 

S1-Ep30_Valerie_Ghant

S1-Ep30_Valerie_Ghant

September 23, 2021

Disabled Lives Matter
Season 1, Episode 30
Co-Hosts: Nadine Vogel & Norma Stanley
Guest: Valerie Ghant

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 with co-hosts Nadine Vogel and Norma Stanley… yay!

 

Nadine Vogel: Hello everyone and welcome to today's episode of disabled lives matter I am nadine vogel your co host along with norma.

NORMA STANLEY: hi everybody great to be back.

Nadine Vogel: I know I know I missed you guys in the last few I covid got me down.

NORMA STANLEY: yeah but we're glad you're back yes.

Nadine Vogel: It will not keep me out that's for sure.

Nadine Vogel: So today norma we're joined by someone, I think that you know Valerie Ghant and Valerie is someone who came to this community by way of I believe Valerie and accident of your daughter is is that correct.

valerie ghant: Yes, ma'am yes ma'am my daughter, unfortunately, was in a hit and run accident.

valerie ghant: She sustained a traumatic brain injury behind it.

Nadine Vogel: Oh, my goodness, I am so sorry how old was she when this took place.

valerie ghant: She was only 19 sophomore in college at Columbus State University at the time.

Ah.

Nadine Vogel: So, so you know, obviously norma and I are special needs moms um but, but not in that way right, you know our kids were born with disabilities and I think that when it's the result of an accident, it just as a whole nother level of trauma.

Nadine Vogel: So norma don't you think.

NORMA STANLEY: Absolutely, I think that that's a whole nother level of trying to adjust to something that you're not used to we our children are born this way, so we.

NORMA STANLEY: You know, go into we go into it, but to have it happen suddenly I can't even imagine, so you said that your daughter was in college and had the accident or was hit by a car and then she was never the same from that tell us of your experience when it first happened.

valerie ghant: well.

valerie ghant: Really when it first happened just unbelievable because it was so you know abruptly.

valerie ghant: Like I mentioned, she was in school at Columbus state sophomore just had graduated that may before the accident and.

valerie ghant: When it first took place, I was just you know overwhelmed as any mom would be with you know emotion, it was a hit and run, so the person that actually hit her you know they you know they fled the scene.

valerie ghant: So it took months.

valerie ghant: Before we actually was able to track them down.

Nadine Vogel: Oh, you did track them down.

valerie ghant: Yes, the Marshal the federal agent the marshals they got involved, and they were able to apprehend him about probably about four months after the accident, but that was just kind of you know it's just a lot of things going on in it at that time so like I said very.

valerie ghant: emotional emotional a lot of trauma, as you say just a lot of trauma involved.

Nadine Vogel: So what so what kind of I mean, I assume, she had the accident went into the hospital was in the hospital for a long time, rehab.

valerie ghant: It happen, a fourth of July weekend so fourth of July and just you know very memorable for me in that way, and that was in July, and she was in the hospital until December we didn't get out.

valerie ghant: And it probably was about two years before things just slow down, because at the time the injury was so.

valerie ghant: catastrophic she had a trach and just all these other things that we're we're new and then she had.

valerie ghant: A shunt also placed so with that it'll be a lot of hospitalization after the accident and sometimes we're in the hospital and as disability moms you guys may know you go in the hospital sometimes that's 30-45 days easily first.

valerie ghant: You know.

valerie ghant: I stay away from that place.

valerie ghant: As much as.

Nadine Vogel: I know I spent I spent three months with my older daughter when she was born, I remember, but nothing, nothing compared to two years, so so on, so you said she had a traumatic brain injury, so I guess you had a bleed or something which is why they have to shunt.

valerie ghant: Yes, ma'am she had a diffused head injury at the time I wasn't aware, you know, I was so overwhelmed on what should have taken place, as far as you know, with this type of impact this type of injury.

valerie ghant: She should have been stabilized and sent to a place that specialize in brain injury.

valerie ghant: That can handle any you know offset or anything that may occur, and you know that didn't happen at that time, so in that place would have been sheltered for us because it happened down in Columbus Georgia, as I mentioned, she was a student at Columbus State University at the time.

Nadine Vogel: A grade so oh my gosh so many issues so.

Nadine Vogel: Well let's let's go back into talk about what the different kinds of injuries were, but I do want to come back to this issue of not being brought to the right location, I think that this is.

Nadine Vogel: A huge issue in so many ways, on so you said she had a trade to breathe, I guess you can read on our own.

valerie ghant: Well, actually.

valerie ghant: She could she will stabilize she could I was able to take the trach out.

valerie ghant: That was a fight with me with doctors, because what i'm learning in the medical industry, sometimes even you know say something like cancer right your diagnosis not really you know, an injury.

valerie ghant: is just a certain format or protocol that they are trained to use, you know and sometimes you can get caught up with those things, and that becomes a whole nother issue you know.

Nadine Vogel: I you know I have and I don't know where, but you have as well experience you know I had doctor the wanted to trach my older daughter, and I said you'll have to cut my throat to get.

Nadine Vogel: to hers, you know, so I remember those things, all too well and.

NORMA STANLEY: And I don't know why, they don't listen to the parents, I mean, I know that we have medical professionals, but we know our children, we know.

NORMA STANLEY: What they feeling with and, for some reason, these doctors don't really want to listen to what we have to say.

Nadine Vogel: You know that's why I started disability mama so many years ago right, it could, and you know Valerie you've seen it but our logo for disability mom is a hot pink boxing glove.

valerie ghant: Oh God.  

Nadine Vogel: And it's like we're gonna fight today right to get what we need for our kids.

valerie ghant: yeah but it becomes so overwhelming and so just so i'm so glad you ladies, you know, created a platform to you know, to discuss issues of this magnitude, because this well need it, you know.

Nadine Vogel: So so let's talk about you ask them to send her to shepherd to the right location for traumatic brain injury and how did they respond.

valerie ghant: Oh, my God, so when it first happened right, you know i'm just overwhelmed i'm like what just happened right my mind is so caught up into that so I wasn't.

valerie ghant: You know I don't blame myself, but I just wasn't thinking clearly because all they were telling me was hey you know they were telling me she was gonna die that was just it she she's gonna die she's not.

valerie ghant: gonna make it and she's gonna die so and I had a praying Community boy I can you know I remember, just like it was yesterday all too well, but.

valerie ghant: It was probably about.

valerie ghant: Maybe 45-60 days and I started getting angry like you know what's going on here a liaison from shepherd Center was there, and she came down, and they have a program that's called.

valerie ghant: What is it disorderly.

valerie ghant: it's like for people that are in a minimal conscious state or just had an injury and they're like in a coma.

valerie ghant: I don't want to quote the name wrong but um I think disorders of consciousness, or something of that something like that, and I wanted her you know I asked them well can she get a bed, you know what you know, a charity bed or something can can we.

valerie ghant: You know shepherd and the only thing that the medical that they offer my daughter at 19 years of age right because she still has aged fighting for her, if nothing else.

valerie ghant: wants to take her to a nursing facility and, later on, as I met other moms on my you know for my brain injury family that's what I like to call it now, you know I learned the things that should have happened way after you know.

valerie ghant: Asia's accident, basically, how you know what should have necessarily took place and it's a lot of is some factors that I, you know know that you know, played a part in that you know I just I don't I don't know why, especially we're being so young.

valerie ghant: And it's.

valerie ghant: You know, different accidents it's people that have been ran over by cars and different things, and you know that's that's you know that's the norm stabilize them and get them to a place that specialize in that type of injury and normally that's brain injury or spinal cord injury.

Nadine Vogel: Right well, so we need to take a really short break when we come back, I want to explore that further or explore what those factors were.

Nadine Vogel: You know why why, why do you think you know they didn't do what they needed to do, and I suspect, I have some ideas, but I want to hear from you so let's go on a very quick break.

Nadine Vogel: And, ladies and gentlemen, don't leave us, we will be back with Valerie Ghant and hearing about this unfortunate story about her daughter.

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 medium vogel want to welcome you back to today's episode of disabled lives matter I am with my fabulous co host normal Stanley norma stanley, say hey.

NORMA STANLEY: Hi guys.

NORMA STANLEY: We're having a conversation here.

Nadine Vogel: yeah Valerie Thank you so much for for your willingness to share such a personal story and and what has happened now five years into it with your daughter's car accident.

Nadine Vogel: Before we before we took a break, one of the things we ended on was, you know that that it sounds like your daughter didn't really get.

Nadine Vogel: That necessarily the right care of that she needed right off the BAT although you were asking for it.

Nadine Vogel: And i'm just wondering if if you have some thoughts as to what those barriers were or factors to do with why she didn't get to a head injury expert, you know why she didn't get moved any thoughts on that.

valerie ghant: Well, in health care alone and it's just it's.

valerie ghant: it's Sad to say.

valerie ghant: But economical status plays a big role and race is a factor as well.

valerie ghant: You know at at not using the race car but i'm living it i've lived it, so I have to bear witness to that you know those were definitely factors that were involved, my daughter actually the insurance that January Asia turned 19 and the insurance that I had.

valerie ghant: dropped her because, when we were first their I guess the insurance Maybe it was showing up in the system.

valerie ghant: And I even had the neurosurgeon going from telling me her father that he could do xyz to he can't do anything.

valerie ghant: And I mean we you know we went back and forth and i'm like you just told us, you know you could you know perform this or take these type of measures, and now you know all of that just kind of changed in in later on in thought i'm just saying I guess that had to play a role in it.

valerie ghant: But they figured out that the insurance that we had it wasn't good they had dropped her.

Nadine Vogel: Oh, my gosh.  Oh, my gosh.

Nadine Vogel: I you know I have this ongoing issue norma you and I have talked about it, we talked about here at springboard just you know we've got to change healthcare.

Nadine Vogel: In this country absolutely I mean disability or not, we have just got to change health care, I have, I have just never seen some of the things that go on, and then I.

Nadine Vogel: I do agree Valerie you know, then we add raised or we add socio economic status and it just I sometimes I wonder what country were in.

Nadine Vogel: yeah right norma I mean.

NORMA STANLEY: Absolutely.

Nadine Vogel: On a regular basis and it's just i'm in all I know, and I don't think it's getting better I think it's getting worse.

NORMA STANLEY: it is absolutely getting worse, it absolutely is getting worse.

NORMA STANLEY: Um hm.. go ahead.

valerie ghant: yeah one of the bigger barriers is cost, just like you know with my daughter, she has a head injury and.

valerie ghant: A lot of therapy, that is offered that can help you know technology Advanced therapy, they do not deal with the insurance at all, because I guess it's such a headache they're not going to approve it.

valerie ghant: I had a personal experience, and it really doesn't matter, even if it's private insurance, we have had blue cross Blue Shield and it was a doctor, I took my daughter, and we went around I went everywhere, but.

valerie ghant: it's important immediately after a big injury, you know, spinal cord brain injury things like that that a lot of the things you take certain measures to kind of preserve certain things.

valerie ghant: from happening that tend to happen so that's why it's very important to get to a specialized facility.

valerie ghant: And so later on down the road.

valerie ghant: You know, once I realized certain things I still went on a rant as a mom and you guys, you know you'll know I drove all to Houston I you know I drove different places.

valerie ghant: But it's very hard, once you get a doctor working on a person and things don't take place to get some kind of recourse because that's a big big protected territory if you know what I mean.

NORMA STANLEY: Just like the police.

valerie ghant: yeah, and so we you know we went to we went to Houston and there was a doctor there she even she was trying to get Asia, maybe then it was probably.

valerie ghant: About two years after the accident.

valerie ghant: And she was trying to get her into TIRR Harmon Memorial it's down in Houston Texas it's probably known as one of the second or third best rehabs and she was trying to get her in there kind of late.

valerie ghant: But blue cross and Blue Shield you know you have to have something like you, meaning, you have to get admitted or something after a big injury to even try to.

valerie ghant: seek some help if that makes sense because that's how these log and different things are set up, so we had a shunt revision there and.

valerie ghant: i'm not sure if you know much about it but that's the procedure we had, and she was trying to you know fight to get Asia in there.

valerie ghant: And she was just even having the conversation how you know i'm not just saying this is facts behind it, a lot of African American or minority when something happens, they are not offer, they are not, they do not receive the proper rehab for some reason.

valerie ghant: So I just want you know, this is not an opinionated thing you know what I mean.

valerie ghant: They don't and My other point is, we had a private insurance, along with medi medicare.

valerie ghant: I think i'm saying that right not medicaid because you have to get that one, two years after the injury, but we at least have both of those and my point is with the private insurance, they were fighting worse.

valerie ghant: They would not approve her to go to rehab I mean it just went back I filed an appeal and she couldn't keep holding us because you know it's about it's a monetary thing.

valerie ghant: In the hospital to get to the rehab because the insurance will not approve it, you know, so it was just.

Norma Stanley: Wow. 

valerie ghant: It was just horrible.

Nadine Vogel: You know, when insurance companies say they don't make medical decisions, but when they do things like that they are making medical decisions they are altering the course of our kids lives or our lives or whoever, you know is is involved and it's just something that.

Nadine Vogel: Ugh.. it's you know you put the knife in and then you turn it so tell me tell me value, today, you know how has this changed your lives how's things going today.

valerie ghant: um well.

valerie ghant: Even at this point i'm trying to understand and adapt to the new norm.

valerie ghant: Hopefully, I mean and I guess, I asked myself some days, what is the new norm.

valerie ghant: You know, we just have a different way of life at this point i'm trying to modify my house at home, where it's A-D-A accessible.

valerie ghant: And you know that's a fight another barrier or a loophole i'm trying to jump through We live in a plan Development Community, and we have an Hoa and I find myself fighting to do that, and my daughter has a disability it's it's insane. 

valerie ghant: crazy yeah.

NORMA STANLEY: yeah and your daughter is in need now. of a standing wheelchair that's something that you can help look at this point, and you need some assistance and getting that because that's a very expensive proposition tell us about what you're trying to get done

valerie ghant: Yes, ma'am i'm trying to get Asia and I go back in my mind and say miss miss norma why wouldn't they offer a 19 year old back then, and you know wheelchair that can stand up, because at that point, you know it's a fresh injury, it could offset some of the things that are.

valerie ghant: happening, when a person is not moving physically.

valerie ghant: Like we are day to day.

valerie ghant: But you know they didn't so now i'm trying to get this standing wheelchair, the cost of the wheelchair is about $40,000.

valerie ghant: After fighting for Oh, I think we went to a seating clinic at shepherd back in November of last year it's almost November again.

valerie ghant: They finally approved it, most of it, but they left a $10,000 balance saying I guess it's not mandatory, that she stands up, even though it will offset other things that take place with by you not standing or being physical.

valerie ghant: You know, physically moving around because you're going to deteriorate, eventually, and I don't know if that's what you know I hate to say it, that they you know, not just for Asia, but with people in this population so yeah it's a.

NORMA STANLEY: So you 

NORMA STANLEY: you have a gofundme you're trying to create tell us about that

valerie ghant: I was trying to create a gofundme and efforts for Asia to get some rehabilitation, because I feel that she hasn't.

valerie ghant: She hasn't had a fair fight I don't feel like she's at her baseline when she returned to that bright 19 year old i'm trusting and believing God I choose to you know not to believe anything but that but besides that if she if she doesn't This could help her so much preserve.

valerie ghant: preserve her health, because if you're not active and moving around.

valerie ghant: you're going to deteriorate, eventually, you know that things are going to start to happen, but this wheelchair is good because it can stand her up like a standard up throughout the day, even if it's only for 10 or 15 minutes every two hours so.

valerie ghant: It helps in that way with her overall well being.

Nadine Vogel: yeah absolutely I you know I never understood this, you know it's not like you said there's known medical issues if someone you know, is in bed all the time we're in a wheelchair.

Nadine Vogel: And so, if we can eliminate some of those you know it's like pay me now or pay me later because if they don't pay for the wheelchair now they don't pay what's needed then there's going to have to cover other.

Nadine Vogel: expenses later like I I never understood that but.

valerie ghant: yeah you know with that it could mean.

valerie ghant: Less E-R visit us, you know what.

valerie ghant: i'm saying big medical stays because you know if you're not moving around you have situations with your.

valerie ghant: With your lungs and you know multiple atrophy is a big thing and it, you know it hurts and cause of the problem, so so i'm like what's really going on here that's why I have to say, are you, you know, hoping for the you know ultimate for this population what what is what is going on.

Nadine Vogel: Right, right.

Nadine Vogel: And, and what I would also say is in terms of your home and the Association on go go on to online and take a look for the state of Georgia, the Department of housing.

Nadine Vogel: It will cover things for private housing as well, relative to disability.

valerie ghant: Okay, thank you, I have looked at the fair housing and unfortunately I think i'm going to have to get them involved, just to make my home A-D-A accessible, I mean it's crazy it sounds crazy, but it is crazy.

Nadine Vogel: yeah.  When you have an association.

Nadine Vogel: It takes on a whole new because the associations can decide really what they want to do, but they can't overrule A-D-A, so I would contact them and have them help you, they should be able to do that.

valerie ghant: Thank you so much for sharing.

Nadine Vogel: yeah absolutely I just.

Nadine Vogel: Oh, my goodness norma.

NORMA STANLEY: Well, I just want to turn to be able to share with the listeners um you know if they choose to.

NORMA STANLEY: If they have resources that can be of assistance will be they can go to get information about you know what you're trying to do to help your daughter.

Nadine Vogel: And I also want to you know folks to hear that these barriers that you've encountered are real, you know.

NORMA STANLEY: There's a lot of people.

Nadine Vogel: These are not stories you hear about you know you're a real person your daughter is a real person you're experiencing this in a real town in a real hospital.

Nadine Vogel: Like We need people to understand this, that this is not made up this is what's going on you're just one person think about how many times a day, every day, this is happening.

Nadine Vogel: in hospitals in rehabs and with insurance all across the country so so I just want to thank you so much Valerie for being willing to share your story.

Nadine Vogel: And you know from the bottom of my heart and norma, we wish you all the best and your daughter, and to be able to recover in as much as and whatever capacity, she has the ability to.

valerie ghant: Thank you.

NORMA STANLEY: share the information with.

NORMA STANLEY: Share the information about it or give them where they eed to go to hel if they can.

valerie ghant: Well, I actually created a gofundme for Asia i'll leave my contact number also you can find that link on my Facebook page and that's Valerie Ghant and Asia's Facebook page is Asia Almez, that's A-S-A-I A-L-M-E-Z. 

valerie ghant: And my contact number is 706-332-1666 again it's 706-332-1666 it's a gofundme link that has been created we're trying to purchase this wheelchair.

valerie ghant: it's from new motion and her name is Asia Hoskins even if someone if they can't contact me i'm you know direct you know contact, however i'm just trying to be a voice for my daughter, right now, because she can't you know, be a voice for herself and try to get her.

valerie ghant: back to the best capacity as she stated as possible because, again I know she's not her bass line this young lady has so much fight in her.

valerie ghant: And I just don't want to sit around and watch her deteriorate, because the cost again that is affiliated with some of these things is just.

valerie ghant: astronomical for any you know even for a middle class family, the cost is just you know you would be bankrupt out of your home truck trying to seek you know seek help.

Nadine Vogel: yep absolutely well Valerie Thank you Thank you so much, once again, for joining us we're going to wish you all the best.

Nadine Vogel: This is nadine vogel and norma stanley signing off from another episode of disabled lives matter remember we're more than a podcast we are a movement, and we hope you will join that movement see you next time bye bye everybody.

NORMA STANLEY: bye bye. Be blessed.

valerie ghant: Thank you.

Nadine Vogel: Thank you.

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.

 

S1-Ep29_Diego_Mariscal

S1-Ep29_Diego_Mariscal

September 16, 2021

Disabled Lives Matter
Season 1, Episode 29
Co-Hosts: Nadine Vogel & Norma Stanley
Guest: Diego Mariscal

 

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 with co-hosts Nadine Vogel and Norma Stanley… yay!

Nadine Vogel: Hello everyone and welcome to today's episode of disabled lives matter, this is not just a podcast, this is a movement, and I am just delighted to be joined by Diego Mariscal today for this movement Diego welcome.

Diego Mariscal: Thank you, thank you for having me really excited to be here.

Nadine Vogel: Absolutely Now I know I know Diego that you, you know you meet people often use a i'm disabled and i'm proud.

Diego Mariscal: yes

Nadine Vogel: A little bit about your background, please.

Diego Mariscal: yeah sure sure, so I was actually born in the United States by accident.

Diego Mariscal: My parents were both Mexicans were shopping and I was born six months and a half into my mom's pregnancy so.

Nadine Vogel: Oh, my gosh.

Diego Mariscal: yep pretty tiny baby my mom jokes and said that i've always been really stubborn even before I was born, I wanted to get out quickly.

Diego Mariscal: So um and so as a result of that I have CP Cerebral Palsy and, for me it manifest in trouble walking.

Diego Mariscal: A little bit of difficulty with reading and writing and.

Diego Mariscal: little bit of difficulty although you wouldn't know it on my hands and sort of dexterity overall, but primarily my legs um and you know growing up.

Diego Mariscal: With a disability in Mexico was definitely an interesting experience from an early age, I realized that I was perceived differently, I remember asking a kid if he wanted to play with me and he said that his dad didn't let him play with weird kids.

Nadine Vogel: Oh, my gosh.

Diego Mariscal: I know. So.

Diego Mariscal: But at the same time, I was lucky enough to to you know be born in a family of supportive parents my brother who's actually 10 months and a half younger than I am so my my parents didn't waste any time.

Diego Mariscal: He doesn't have a disability, and so, because we're so close in age in fact people call us Irish twins.

Diego Mariscal: So, because he doesn't have a disability and I think my parents, especially my mom did a really good job of.

Diego Mariscal: Setting the same level of expectations for me, as she did, as they did for my brother so.

Nadine Vogel: Yay mom.

Diego Mariscal: Right right.

Diego Mariscal: So, so if he has to make is bdd, I had to make my bed too you know clean up the table, all that stuff and so obviously with accommodations and modifications right, I would only carry like plastic cups. and plastic plates.

Diego Mariscal: What it did said it did set a parameter for me of of you know, high expectations and really being able to do whatever it is that my brother, and I wanted to do and so from there, I.

Diego Mariscal: I was a and i'm happy to go into any.

Nadine Vogel: direction you.

Diego Mariscal: want me to go, but I was a paralympian for a while then I started my first company in high school and then now I work on supporting other entrepreneurs with disabilities so.

Nadine Vogel: So, so I do let's let's go back to age 18 because I believe that age 18 you while still in high school you actually started is limitless prepatec

Nadine Vogel: yeah talk to us about that.

Diego Mariscal: yeah so you know that was interesting, so I was one of the few disabled people in my high school at least outspokenly.  You know.

Diego Mariscal: um and I felt like I wanted my peers, to understand what I was going through right um and so as a way to explain to other people I don't honestly as a way to make friends, I was like.

Diego Mariscal: What if we created a club that was all about teaching students about disabilities, so we would do things like eating without being able to see or using public transportation while in a wheelchair.

Diego Mariscal: love it, love it.

Diego Mariscal: and in 4 years, we were in 15 high schools across the country 80% of it was corporate funded um and it continues to be one of the largest youth led movements.

Diego Mariscal: About disability in Mexico, that in hindsight, you know, there are some things that I think we could could improved but I learned a lot, I was 19 at the time. so really really proud.

Nadine Vogel: Well, you know what's new what's fascinating about that though is that um so when my older daughter.

 

Nadine Vogel: And she has disabilities and when she was very young and in school, she was fed through a gastrostomy tube and had other issues and people would make fun of her the kids.

Nadine Vogel: And I would come into the classroom and we would sit in a circle, and we would kind of educate the kids.

Nadine Vogel: So that they would they wouldn't fear what they saw right and it would be more comfortable and engage her as a friend and so forth, so.

Nadine Vogel: You know it's interesting to hear what you did i'm like oh my gosh we could have started a whole movement across the country look what you did and and and I was this you know smart educated parent and I couldn't have thought of that, and you would 18 had this whole idea and oh. My gosh so.

Nadine Vogel: kudos to you, and you know it's interesting and you know I personally and I don't know how we should talk about how you do this but.

Nadine Vogel: I personally feel, how do you do we should take that program somehow right and how do you replicate it in other countries, because.

Nadine Vogel: You know i'm a firm believer that if we educate children.

Nadine Vogel: On on disability etiquette and things like that they won't become what I like to refer to as the stupid adults.

Nadine Vogel: Right and then we wouldn't have half the issues, I think that we have sometimes in corporate and to society in general, so I think that that's so powerful and especially like you said you know it's been corporate funded have you thought about bringing that to other countries.

Diego Mariscal: So that was actually so it's funny you say that.  Because.

Diego Mariscal: You know how to get this Together International so it's actually international because the original name of the of the of the movement in Mexico was together.

Diego Mariscal: And so, when I came to the states we we put together international because the idea was to bring it here that was that was idea.

Diego Mariscal: Okay um but what I learned, when I was trying to do that is a couple of things culturally there's a more vibrant.

Diego Mariscal: Disability Community here, and then the movement I think it's a little bit farther along and so some people in the disability Community looked at that as.

Diego Mariscal: kind of blackface.

Diego Mariscal: So a you know just because you're in a wheelchair for a day doesn't mean you fully understand what it's like to to hop to be in a wheelchair, you know.

Diego Mariscal: So that was one side of things, but then the other side is that, and this is where I think you know things could have been better, but the other side was.

Diego Mariscal: We were educating non disabled people, and so it was a bunch of.

Diego Mariscal: And the majority of people in colleges and high schools, and you know.

Diego Mariscal: For a variety of systematic reasons tend to be not disable, and so it was not disabled people educating other non disabled people. About. 

Nadine Vogel: Yeah that's not right that's what we want to do, but if we could have.

Nadine Vogel: People with disabilities, children.

Diego Mariscal: Yes, it is.

Nadine Vogel: And if it's younger children, then, accompanied by their parents.

Nadine Vogel: yeah just educating young children.

Diego Mariscal: Yes.

Nadine Vogel: right.

Nadine Vogel: Because I you know this doesn't need to be about the adults, this is about the the the elementary school middle school.

Diego Mariscal: yeah.

Nadine Vogel: Oh, my gosh well just know if you ever decide, you want to go back and do that I you got to support it here I think it's so important.

Diego Mariscal: We should we should talk about that because that'll be great.

Nadine Vogel: And i'm sure i'm sure my older daughter Gretchen who you probably talked with to get this.

Nadine Vogel: scheduled she works for our company we'd love to talk with you about how to do that.

Nadine Vogel: So yeah I should I should hook, the two of us to connect on that because that's.

Diego Mariscal: Just yeah.

Nadine Vogel: Yes, so so important, I will do that actually um so let's move forward so in.

Nadine Vogel: 2015 you founded Together International right now that's focused on supporting entrepreneurs with disabilities right.

Diego Mariscal: Yes, yes.

Nadine Vogel: So how are you supporting them what are you doing for them.

Diego Mariscal: yeah great question, so we are an accelerator by and for founders with disabilities, and so we look at.

Diego Mariscal: Really accelerating businesses, led by or startups led by people with disabilities and really the whole premises as disabled people, we have to solve problems every day.

Diego Mariscal: From the moment we wake up, we have to figure out how do we get dressed how we drive how we communicate and so those are problem solving skills.

Diego Mariscal: That if given the right resources, support and guidance can turn into thriving businesses um so it's all about a.

Diego Mariscal: Using that innate ability that or innate characteristics that disabled people have.

Diego Mariscal: to advance their businesses forward.

Nadine Vogel: got it got it and I think the same goes true for people with disabilities, not even in their own businesses but working in other businesses.

Nadine Vogel: And I you know i've heard you say disability is an asset for performance, I could not agree more, but i'd love for folks to hear when you say that what do you mean.

Diego Mariscal: yeah so the best example is you know there's this there's this common saying right doesn't matter how many times you fall it matters, how many times you get up.

Diego Mariscal: Well i've literally fallen thousands of times in my life.

Diego Mariscal: No exaggeration, literally falling thousands of times in my life and i've gotten back up thousands of times in my life right and.

Diego Mariscal: that's an example of just the resilience that that takes not in a hypothetical or metaphorical way it, you know, in a very real way very tangible way and so translating that in the business context, I mean talk about resilience right and the importance of of.

Diego Mariscal: harnessing that and that's just one aspect also um creativity right.

Diego Mariscal: You have to figure out how am I going to one of the things I have to think about is how am I going to get dressed in the morning how am I going to put my shoes on and.

Diego Mariscal: Little things like that you know force you to be creative in a way that you can translate that into a corporation, and then organization um

Diego Mariscal: I think.

Diego Mariscal: The step beyond that is for companies and organizations to create an atmosphere where that's allowed because sometimes there's a lot of internalize ableism that.

Diego Mariscal: folks with disabilities don't want to disclose their disability or don't want to show.

Diego Mariscal: that they have a disability, because of the internalized stigma um so so it's about creating the right atmosphere, to let those skills flourish.

Nadine Vogel: Right right no it's it absolutely it's about Problem Solving it's I mean, I agree, I always say you know i've seen my daughter do things in a way that i'll look and be like why on earth would you do it that way, but then you try it yourself and you realize that's more effective.

Nadine Vogel: Right or it's quicker or something it's more efficient and I, you know I clients of ours, you know as they've hired individuals with disabilities.

Nadine Vogel: And they start getting comfortable and they see and realize the benefits, then it's like Oh, we should of you know, we should have been doing this, a long time ago right it's so it's It is interesting, but people fear what they don't know.

Nadine Vogel: And what they haven't experienced and that's what that's what takes me back actually to why i'm so excited about what you've done with educating children.

Nadine Vogel: Because if we educate them at that age and they grow up not fearing disability and they grow up understanding that everyone is alike, then.

Nadine Vogel: Then it changes right by the time they get to college, by the time they get to the workplace it completely changes and that's that's what we need.

Nadine Vogel: We have a saying at springboard where we say to mainstream people with disabilities right it's not about treating everyone the same but giving everyone the same opportunity, yes.

Nadine Vogel: And that's really important, so it is time for us to take a short break, so we will do that for our listeners, please don't go anywhere we'll be right back with Diego and just hearing about his amazing story be right back everybody.

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 disabled lives matter more than just a podcast, it is a movement and Diego we are having this amazing conversation about all these just incredible things that you have.

Nadine Vogel: achieved and are continuing to achieve not just to benefit yourself but benefit the world of disability, which is really important, because, as we say disabled lives matter, and they do.

Nadine Vogel: And you know hearing hearing about what you've done what you've accomplished, and what I think is coming down the path.

Nadine Vogel: Just proves that point so to that end, I believe you have some kind of tech cohort that's coming up, I actually think you're partnering with Google or something so, can you share with us a little bit about.

Diego Mariscal: Yes, yes, so I just have to say, this is not a partnership, it is with support from Google to start.

Nadine Vogel: Okay okay.

Diego Mariscal: clarify that um but yeah no we're super lucky to have Google for startups involved in this this tech cohort um, and the reason we have to clarify that partnership pieces, because they have a partnership Program.

Diego Mariscal: That you have to respect that.

Diego Mariscal: They're whole streamline it is.

Nadine Vogel: what is this exactly then.

Diego Mariscal: so this is basically they this tech cohort and i'll get into what that is but this tech cohort it is possible.

Nadine Vogel: okay 

Diego Mariscal: With the support of Google for startups um and we're actually working with them to essentially become part of their partner program, which means that our entrepreneurs will have access to programming their ecosystem all that stuff but there's a rigorous application.

Diego Mariscal: process and all that so.

Diego Mariscal: we're working we're working on making that happen.

Nadine Vogel: Okay 

Diego Mariscal: um. But anyway, so the our core programming right now is our accelerator program which is basically three months.

Diego Mariscal: folks get coaching they get access to classes, they get peer to peer support network they get funding, so we tried to really do kind of comprehensive accelerator program for founders with disabilities and to that end we.

Diego Mariscal: We tend to do theme related cohorts so we had a women's cohort and we also had a DC full cohort and now we're doing this tech cohort with support from Google for startups.

Diego Mariscal: And.

Nadine Vogel: And you always have a company supporting in some way.

Diego Mariscal: Well we're moving towards that hopefully.

Nadine Vogel: Okay.

Diego Mariscal: We didn't we didn't I mean we started working with our first cohort was supported by DC government our second cohort was supported by a foundation, but we want to, we want to make sure we're involving corporations.

Diego Mariscal: As as we continue to grow so.

Diego Mariscal: what's great about working with Google for startups is that.

Diego Mariscal: Their.

Diego Mariscal: um team is involved right, so the the entrepreneurs will have access to.

Diego Mariscal: The some you know, a product mentors ah technology cloud credits, you know and really the exposure that comes with being associated with Google for startups and so that's also an added value that we can bring to the table.

Nadine Vogel: And and and when when when you have folks in this cohort approximately how many folks again, do you have.

Diego Mariscal: So we accept anywhere from 12 to 15 but so far we've gotten about 200 requests per application.

Nadine Vogel: So oh my gosh.

Diego Mariscal: yeah it's gonna be a tough time.

Nadine Vogel: what's the evaluation.

Nadine Vogel: process like who makes that decision.

Diego Mariscal: yeah great great question so um so we have.

Diego Mariscal: You know, a standard application that our Board, which is made up of entrepreneurs and people with disabilities have.

Diego Mariscal: put together, as well as looking at accelerator best practices so there's the first filter is the application process then we do a second round, which is the round of interviews with the 30 finalists then we select 15.

Nadine Vogel: wow and how long does the program last.

Diego Mariscal: it's a 12 weeks so it's.

Nadine Vogel: yeah and what is the goal at the end of that 12 week.

Diego Mariscal: So the goal is really to advance your business forward.

Diego Mariscal: At a significant to accelerate your business hence accelerator.
hey.

Diego Mariscal: To really advance their their business forward, I mean we had we recently did a women's cohort and, you know when you look at.

Diego Mariscal: The the 12 women that presented, you know from their application to the three months it's night and day it's like they're ready mean they can confidently go in to an investor meeting.

Diego Mariscal: Where they can.

Diego Mariscal: confidently you know present to a partner, it really it's really great, and I think part of it is also a huge value that we see is one the coaching component is huge, but the other is being surrounded by 12, 12 to 15 like minded people for three months.

Diego Mariscal: Right and that's a huge deal.

Diego Mariscal: Because entrepreneurship can be lonely right surrounded with people that you can relate to.

Nadine Vogel: And let me, let me jump on that about the loneliness.

Nadine Vogel: Because obviously you're doing this during Covid.

Nadine Vogel: So i'm assuming right now it's virtual has it always been virtual.

Diego Mariscal: know the first the first accelerator we didn't person and we actually were adamant about maybe doing it in person to allow people to really connect and engage.

Diego Mariscal: Covid it for us really I would say, was a blessing, though.

Diego Mariscal: Because we were able to serve more people, and we were also able to make the program more accessible in terms of accommodations that.

Diego Mariscal: So we actually.

Diego Mariscal: will probably do one or two accelerators in person, but they'll be most likely they'll be people that have already gone through our Program.

Diego Mariscal: And we might invite them to come in person and.

Nadine Vogel: Maybe like an alumni.

Diego Mariscal: Yeah.

Nadine Vogel: so i'm pleased you for our listeners if someone is listening and says oh my gosh I want to add to this 200 applications and make it 201 how do they do that and they apply or get in.

Diego Mariscal: touch, yes, so the application is is on our website, right now, I believe, when this episode ends, it will be closed we're closing on a Monday.

Diego Mariscal: Okay, but.

Diego Mariscal: Hopefully i'll send you all the information and, hopefully, you can share it on the listserv put it on social media.

Nadine Vogel: Yeah.

Diego Mariscal: um because we would love to have Members from your Community be a part of this.

Nadine Vogel: Can you just tell everyone with the website is at least.

Diego Mariscal: Yes, yes it's together dash international dot org now but kicker is that together is with a 2.

Nadine Vogel: Number two and then G-E-T-H-E-R dash international www.2gether-international.org.

Diego Mariscal: That are yeah.

Nadine Vogel: Okay excellent so we don't have much time left, but in in in the time we do have, I have two questions one, what do you see the future is for the organization.

Nadine Vogel: And then I just want to end with just some of these amazing awards and things that you've won, but what do you, what do you see the future.

Diego Mariscal: So, really, I mean I started this because I wanted to redefine the way people thought about disabilities and the way people perceive disabilities, so my goal really is that people see disability as.

Diego Mariscal: An asset to business as value to diversity, and so we just happen to be doing it through entrepreneurship, right now, but that may evolve, or you know we may add things down the pipeline it really having someone who.

Diego Mariscal: Richard Branson or the the the entrepreneurs on Shark Tank they all have this ability, but they're not necessarily until recently, they weren't necessarily very outspoken about that.

Nadine Vogel: way.

Diego Mariscal: To me, and what to support the next you know, to find the next billionaire.

Diego Mariscal: Who has a disability, and say that yeah it's not in spite of my disability as exceeded it is.

Nadine Vogel: Because of my disability.

Diego Mariscal: The strength that that.

Nadine Vogel: Absolutely.

Diego Mariscal: that's the future, I see.

Nadine Vogel: In closing, I want to close on this whole interview has been a high for me that I want to close that even a bigger high you have.

Nadine Vogel: My gosh.

Nadine Vogel: You have won so many awards.

Nadine Vogel: you've participated in the global entrepreneurs summit.

Nadine Vogel: you have won awards from the International Council on disabilities, you were the first United Nations World humanitarian so with all of these things just tell us what.

Nadine Vogel: What do they mean to you individually and then, what do you what do they mean, do you believe to just people with disabilities at large, or the impact to the Community 

Diego Mariscal:  yeah.  well.

Diego Mariscal: I mean individually to me, maybe sound counterintuitive but to me individually, they don't really much because it really it's a reflection of.

Diego Mariscal: A lot of people that have been supporting me along the way, and they're not really a recognition of my accomplishments alone their recognition of the people and the team behind me from my parents to other disability advocates who have mentored me and supported me, and so I think that.

Diego Mariscal: to tie it back to the other point which is what they mean for disability community at large, I think I hope that they serve as a reminder that.

Diego Mariscal: really effective transformative change comes from Community and being really.

Diego Mariscal: intentional about that and so um I hope that whoever is is reading or listening to this recognizes that there's a whole.

Diego Mariscal: village behind those those awards, and so the more that you can surround yourself with people that are going to push you but also believe in you, I think, the better the whole movement is going to be.

Nadine Vogel: could not agree more what a what a great way to close out this interview Diego Thank you so so much, I am just loving hearing about everything that you've done.

Nadine Vogel: And everything you're doing and just you know excited to see what the future brings.

Nadine Vogel: I guarantee this is not the last time you're going to hear from me or from springboard I suspect it might be some other opportunities we can connect on but.

Nadine Vogel: For this issue of or this this issue of disabled lives matter, I just want to thank you very much, and I know our listeners are going to very much enjoy enjoy this podcast so thank you.

Diego Mariscal: amazing, thank you for having me, really, really appreciate it.

Nadine Vogel: Absolutely 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.

 

S1-Ep28_Khafre_Jay

S1-Ep28_Khafre_Jay

September 9, 2021

Disabled Lives Matter
Season 1, Episode 28
Co-Hosts: Nadine Vogel & Norma Stanley
Guest: Khafre Jay

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 with co-hosts Nadine Vogel and Norma Stanley… yay!

NORMA STANLEY: Greetings everyone I am norma stanley and you're listening to disabled lives matter and my co host nadine vogel couldn't be here today, but we are so excited to be speaking with Mr Khafre Jay, am I pronouncing your name right. Khafre.

Khafre Jay: My dad put the strong E on the end of it.

NORMA STANLEY: Oh, okay.

Khafre Jay: It's K-A-U-F-R-E-E, like coffee.

NORMA STANLEY: Okay, like coffee but K-A-U-F-R-E-E. Okay.

Khafre Jay:  Yeah, yeah.

NORMA STANLEY: I'm bad at pronounciations, but.

NORMA STANLEY: You know he is the executive director and founder of hip hop for change and um he you know, has an amazing organization and.

NORMA STANLEY: Actually, as an initiative dealing with mental health and we want to have a discussion with him about mental health in the black community because what disabled lives matters is all about is.

NORMA STANLEY: You know the intersectionality of black lives matter and people with disabilities, they matter to, and we want to make sure that people.

NORMA STANLEY: understand.

NORMA STANLEY: The viability and the opportunity and the significance of both these communities and how they intersect in many ways and one of those ways is mental health and how we are treated.

NORMA STANLEY: People with disabilities and black people in general.

NORMA STANLEY: Have health issues or mental health issues that.

NORMA STANLEY: they're not recognizing or.

NORMA STANLEY: You know when they do recognize it it's past the point when they should have done something so we want to talk about today with you and i'm so excited to meet you.

NORMA STANLEY: And to learn about what you've been doing them i'm very impressed with your work, I did a little research and check out a couple of videos and like I said, if I love the tedx talk and your talk on food justice cause that is a real situation, you can.

NORMA STANLEY: And you know Robin Hood tax, I mean we can have a little conversation about all of that.

Khafre Jay: yeah.

NORMA STANLEY: You know let's talk about mental health and the black Community because that's a real situation.

NORMA STANLEY: um you stated some facts, and some of these facts I already know, but you know, but I want you to if you have any I can I can put some out here, and you can send it to you, I mean you know have you talk about it but 20% of African Americans are more likely to experience mental health issues.

Khafre Jay: yeah.

NORMA STANLEY: Go ahead.

Khafre Jay: No, no, go ahead go ahead I didn't mean to lean in.

NORMA STANLEY: Basically and that's true, and one of the things that you mentioned in a post that you made recently I didn't even realize is that um.

NORMA STANLEY: You know well that's not true, I didn't realize it I just never really it never hit me until I saw it in in 

NORMA STANLEY: Writing I guess that the African American children are a more likely than other children to.

NORMA STANLEY: have experienced violence and impacts their their mental health as a as they grow up and I grew up in East Harlem Spanish Harlem New York.

NORMA STANLEY: And I saw violence all around me as I grew up I grew up in the hood basically, I never thought about it, when I was 16 I was 16 I might have been 15.

NORMA STANLEY: We lived in the projects and I heard, what I thought were firecrackers so as I went to look out at the people because we lived on the first floor and all I could see was like the lightning of the gun.

Khafre Jay: Yeah.

NORMA STANLEY: They were shooting somebody, I don't know who was I found out, the person who got shot was later, it was a friend of the brother of a friend of mine uh but you know right after that my mother said, we are leaving.  I'm gonna get you up out of here.

NORMA STANLEY: Um so I saw a lot of it my mother coming from the Caribbean my mother kept us kind of sheltered.

NORMA STANLEY: So we didn't get we didn't we weren't out didn't get involved in any of that stuff but I saw it.

Khafre Jay:  Yeah.

NORMA STANLEY: Um you know I think you're right.

NORMA STANLEY: To see that kind of thing all the time, definitely will impact your mental health, I mean.

NORMA STANLEY: Can't event imagine.

NORMA STANLEY: Can you speak a little bit about what you know. Of that.

Khafre Jay: Yeah, yeah you know I mean We grew up in very similar situations, I grew up in the Hunter's Point San Francisco a spot that's definitely not on the tourist map.

Khafre Jay: Even though we have the oldest Opera House west of the Mississippi.

Khafre Jay: But um yeah you know violence was a part of my life and.

Khafre Jay: You know i'm really new to this mental health game, you know i'm really new to this activism game matter of fact, I started my progression even understanding patriarchy as deep as I do now, when I started hip hop for change, you know.

Khafre Jay: starting a social justice org that's rooted in egalitarian practices with a bunch of really bad as activists women around you and and queer folks like i've been coming into my own.

Khafre Jay: learning what our Community really needs you know and learning my Community better than I ever have and that's why I've been stepping into this mental health sphere.

Khafre Jay: Because I just realized that I have ptsd you know i'm saying for the last few years and I grew up in that, and I was beaten up at gunpoint twice by the S-F-P-D before I was 17.

Khafre Jay: You know first day I cashed my first paycheck and then three friends work for the SF league urban gardens and we went to the bank, at the same time to cash our checks and somebody said these 15 year old black men are robbing the bank.

NORMA STANLEY: Oh, no.

Khafre Jay: And so I, yeah so I know what the SFPD looks like when they think you're robbing a bank.

NORMA STANLEY: Yes.

Khafre Jay: It's very violent, but I also grew up around a lot of violence, you know what I'm saying I also grew up with a lot of the other issues in the black and brown community.

Khafre Jay: out here, and you know I just learned this statistic when I started hip hop for change that 30% of kids in oakland have been diagnosed with ptsd by the CDC in 2012, and this is real, you know and.

Khafre Jay: One of the things we've done with our education program is to make sure that all our teachers are trauma informed.

Khafre Jay: And that's really, really important if we talk about the ways the school to prison pipeline, you know metastasizes.

Khafre Jay: it's in the way these teachers view these kids view them as defiant rather than you know going through some issues you know i'm saying so I really feel like.

Khafre Jay: The one thing that the White supremacy does to black and brown peoples and puts us on edge, it puts us in survival mode cortisol fight or flight all this other stuff.

Khafre Jay: But it also it also changes the way that people view us right through this white supremacist lens stereotypes, it's even worse when you look hip hop right.

Khafre Jay: Now you know and your number one media representations are that of the stereotypes that suburban white men who, by 75% of hip hop they want to see about us, you what I'm saying.

Khafre Jay: As it's always been the case so you have a lot of kids growing up in violence right there also some of them are hungry.

Khafre Jay: Right, some of them are vitamin D deficient.

Khafre Jay: You know what i'm saying, which also helps to lessens your mental health.

Khafre Jay: Excuse me, but.

Khafre Jay: But you know I think I think the ways in which we view these black and brown kids is not through a lense of empathy and the lens of their own humanity we've viewed them as what we've been conditioned by.

Khafre Jay: And that exacerbates mental health that sends kids to the prison through the schools and it manifests in every social interaction that our young black and brown kids especially who are hip hop culture deal with today.

Khafre Jay: And so I started this nonprofit and it's built off of grassroots street team model I was the first black coordinator for Greenpeace I ran their entire Bay area fundraising team and I took that model.

Khafre Jay: And I meshed it with hip hop, so in that time we can pull it over 900 people with the grassroots job wearing this in white supremacy T shirt in the full white spaces.

Khafre Jay: Talking about race having about 30 to 50 conversations a day and it gets hectic.   We talked to a lot of really beautiful people, but we also get cussed out.

Khafre Jay: We also do called the "N" word.

NORMA STANLEY:  That's pathetic.

Khafre Jay: Oh yeah it comes out of them, you know what I'm saying.

Khafre Jay: But you know I realized quickly that when you have the only brown diverse grassroots canvas team.

Khafre Jay: You got to deal with some different things you know i'm saying you got to deal with the issues from these communities and one of that is mental health.

Khafre Jay: And i'm saying one of that is realizing that the reason why people are late sometimes is not just because they don't care you know what I'm saying they might be dealing with other things you know and, but I think I think out what is the statistic i'm trying to remember.

Khafre Jay: there's about there's about 16% of black people that report, having mental illness.

Khafre Jay: Yes, I think that is a low number I think it's probably under reported to be quite honest.

NORMA STANLEY:  I agree.

Khafre Jay: Yeah and so we're working with this beautiful diverse grassroots street team and i've got people on my team who have disorders or have different mentalities bipolar disorder or whatnot i've had a person schizophrenia on my team.

Khafre Jay: And these are like these, these named illnesses that people have told me about you know what i'm saying, other than that people are just stress and stress.

NORMA STANLEY: Stress will do it.

Khafre Jay: Yeah and i'm not a therapist i'm not a psychologist.

NORMA STANLEY: I totally get it stress will do it, I ended up with epilepsy at 48 years old, adult onset epilepsy due to stress.

NORMA STANLEY: I didn't know it was under stress, I mean I was just doing what I usually do.

NORMA STANLEY: Doing everything raising my daughter with disabilities, trying to.

NORMA STANLEY: You know, build a business and running I just do a lot because that's who I am but I was putting myself under unnecessary stress I didn't realize.

Khafre Jay: yeah.

NORMA STANLEY: I'm being very particularly now, about how I take care of myself, so if it ever comes back by the grace of God i'm no longer medication for it.

Khafre Jay: Yes.

NORMA STANLEY: You know, so that hit me between 40 I would think that was 48.

NORMA STANLEY: And I was on medication for about five years and I couldn't drive and do the things that I wanted to, they take your license if you have.

NORMA STANLEY: You know, so those are things that people tend not to think about and then, when you come in situations where you know.

NORMA STANLEY: Where our young black men are being arrested and and sometimes killed because they may have you know ptsd or autism situation and sensory situations there they don't understand and the cops are not trained.

NORMA STANLEY: These things and our children are being killed as a result and so we have to address, we have to address it from every level, you know from home, all the way to the street.

NORMA STANLEY: You know this is a real thing.

Khafre Jay: I think you also bring up a really important point, you know we put the we are taught, you know as poor black people to put the world on our shoulders right.

Khafre Jay: And we have to make it through, we gotta fight a nothin promised and aint nothin given you know there aint no time to cry get up you know you gotta.

Khafre Jay: get up and punch them harder, you know we are taught to be superheroes.

Khafre Jay: And and and and and that also gets wrapped up in patriarchy a male toxicity that I also fell into, when I was 16 - 17 trying to find my power ended up gang banging a bunch, you know what i'm saying.

Khafre Jay: And going the wrong way it took me a long time of introspection and, fortunately, you know wrapping and MCing and gave me that vehicle for introspection to get out of that.

Khafre Jay: But all that is what we're dealing with we're dealing with the superhero complex and a big need for a space to just breathe and the coping mechanisms to deal with our own trauma.

Khafre Jay: And I see that coming out in people, I see that i'm dealing with a average age of 23 for our canvases.

Khafre Jay: And they're finding themselves at the age where I found myself, so I need to provide them anything I possibly can to make sure their whole intact people and that's really what i'm working with.

NORMA STANLEY: Amen we're gonna take a quick break and come right back and speak a little bit more with Mr. Khafre Jay.

Khafre Jay: right on.

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

[COMMERCIAL]
Hi, I'm here to talk to you about springboards. 2021, 7th annual disability connect forum, save the date. It's happening Tuesday, September 14 via live stream, you know, we tag the phrase, quote unquote, We Are Better Together. Why? Because together we can achieve change, especially since this forum focuses on the intersectionality persons with disabilities. The lgbtqa+ community and Veterans, the major issues impacting these constituents and more So join us for the conversation again, the 2021 disability connect Forum livestream, Tuesday, September 14th, to learn more. Purchase a ticket and register visit w-w-w consult springboard.com. Front slash 2021 - disability - connect Front / hashtag. Welcome. Can't wait to see you there.

Voiceover:  And now back to our show.

NORMA STANLEY: Well, we were just talking about the whole you know mental health issue and and and the lack of sensitivity that people who don't understand African Americans and what the trauma they have been through and a few understand a few understand quite well you know and a few don't understand.

NORMA STANLEY: I mean, let's not even get into that conversation um.

NORMA STANLEY: But yeah like you say there the.

NORMA STANLEY: Black man is not allowed to have the vulnerability to cray and to feel and to to like you said it, that black men and black women are expected to be super people.

NORMA STANLEY: And to just deal with whatever comes your way just just deal with it and keep moving, but you know that manifest itself physically, as well as mentally it does, it has to go somewhere all that stress and all that you know trauma and it has it and then we end up with issues.

NORMA STANLEY: Sometimes physical, sometimes mental and.

NORMA STANLEY: If we don't have people to talk to if we don't have people to understand and like you say just kind of debrief at times.

NORMA STANLEY: It could cause a whole nother set of issues and our children are growing into this, so your organization tell us more about what your organization is doing and.

NORMA STANLEY: You know who are some of your supporters.

Khafre Jay: yeah you know first off I just got to break down paradigm with what we are dealing with and why, after the '96 telecommunications act.

Khafre Jay: It allowed for the corporate consolidation of mass media right now three media companies times sony and universal own 90% of the means producing hip hop.

Khafre Jay: And hip hop's culture and hip hop's depiction, they own that, and you know they're million billion dollar industries, so they only place their money on what's going to make the best bet for them to make money on.

Khafre Jay: It right now, you know 80% of the audience for hip hop is suburban white men almost you know i'm saying between 18 - 24 buys about 75% of hip hop.

Khafre Jay: And they you know, in the 80s, that was fine when fight the power was the number one song and hip hop is that beautiful bridge.

Khafre Jay: But you know the industry found out it's really difficult to sell diversity diverse culture, you know what  i'm saying.

Khafre Jay: and selling a culture where people have all these cultural norms and values and rules.

Khafre Jay: They figured out these white kids don't even know what's going on, and you know the easiest things to sell in America is sex drugs and violence, you know the problem is is people can play hip hop with pure blackness you know I'm saying.

Khafre Jay: And these corporations only invest in an artist and they put them on the cover of the magazine, and they put them.

Khafre Jay: On this and they put them on hip hop dx and all the they have the whole machine to make these artists So while we have you know YouTube and tick tock.

Khafre Jay: it's about bandwidth we don't ever have the same band with the $7 billion industry has so they've taken our depiction and they've turned it into stereotypes like they've always done with black and brown people in all white and controlled media period.

Khafre Jay: The problem is, is now people believe that so our kids are being treated thusly when I walk down the street.

Khafre Jay: And I don't have my daughter with me people grab their babies and I tell them I don't eat babies i'm full you baby's safe, you know what i'm saying, because I gotta say something.

Khafre Jay: But I have the coping mechanisms to be able to deal with those interactions a lot of our kids don't nor, should they have to but regardless of scaring white folks you know what i'm saying.

Khafre Jay: Because of their internalized white supremacy, I think the biggest thing is, is that, if your hip hop culture right.

Khafre Jay: Meaning you walk it you talking it you dress it, you paint it you think it you dance it you're hip hop culture.

Khafre Jay: You should be able to have access to that culture into the cultural expression to the forums and to the economy of hip hop without being exploited by the music industry that's not FUBU, it's not for us, or by us.

Khafre Jay: So what I did is I created a non profit 501 C three Community controled platform.

Khafre Jay: To read to recreate the needs of producing hip hop for local local hip hop.

Khafre Jay: You know, we have all these artists that are so powerful and they have important narratives but they can't get people to come to their shows they don't have the budgets for them, they don't have the funding and all that.

Khafre Jay: And we lose the economy around that so we started a grassroots street team stand out there, just like Greenpeace and all them, but we flag you down say talk to me about white supremacy.

Khafre Jay: And then we talk to you about the cooperation of hip hop and the racism and oppression and the criminalization of black and brown youth through that and that's what we get most of our money from those communities that are afluent.

Khafre Jay: We have 50,000 conversations about who we are, every year we take that money back, we put into educational where we're getting local hip hop artists fingerprinted TV testing trauma informed and in the schools we taught 26,000 kids K through 12.

Khafre Jay: The history of hip hop that's rooted in peace love unity, and having fun and really letting these kids know they aint doing nothing different than their parents did their ancestors they come from an unbroken chain of excellence right.

Khafre Jay: And then we teach them how to actually wrap break dance FUBU beat and DJ and, lastly, we throw fat hip hop shows where we get big organizations like.

Khafre Jay: Greenpeace, Sierra club, to sponsor so it's free and for all ages, we just had our environmental justice seminar with black thoughts, side rock from from dead prez and.

Khafre Jay: Matthew Tejada from the office of the EPA last year we had to Ilhan Omar's daughter on our panel and we invite.

Khafre Jay: Local environmental justice orgs who want to come table and connect to these.

Khafre Jay: People who create these free all age platforms to create the economy and also to pass around important issue so we're taking the game back and we're just asking people to go to hip hop for change.org and join the fight for the culture.

NORMA STANLEY: Well, I will be one of your people. Because.

 

Khafre Jay: Yes, Yes.

NORMA STANLEY: Because I mean, I just love it I know anything we need to do to say take back our narrative and make sure that people understand actual power, you know, and we have to, we have to create it.

Khafre Jay: Yes.

NORMA STANLEY: We have to do it ourselves and not so much depend on anybody else to do for us do it ourselves, and I love what you are doing and I love you know I don't know if you have any disabled rappers, but.

NORMA STANLEY: You know, we've got some for you.

Khafre Jay: yeah yeah.

Khafre Jay: there's there's my man.

NORMA STANLEY: Is a place that you know.

NORMA STANLEY: And that's got a place in my heart and nadine's heart and we want to make sure our community is included.

NORMA STANLEY: So you have any artists who have disabilities.

NORMA STANLEY: In additionl to mental illness or challenges are there any that you know of do you know the mass of people I can introduce you to.

Khafre Jay: This is an amazing man, named leroy who runs a nonprofit called crip hop.

Khafre Jay: And he runs a community.

Khafre Jay: Definitely able people that are wrapping.

Khafre Jay: break dancing and doing all kinds of stuff.

Khafre Jay: yeah he's a cool cool guy and really stands up for the culture,you know what I'm saying and that's The one thing it's like people hit us up and they're like you know hip hop artists like this, and this and that like yeah because hip hop is the Community.

NORMA STANLEY:  It's everything 

Khafre Jay:  Yeah, it's everybody like so yeah you know. You know pride SF hit us up and we got PRIDE artists, you know, we had a Spanish speaking delegation go down to El Salvador like it's you know it's nothing we hip hop is everybody, you know so yes everybody's rapping in the hood.

Khafre Jay: everybody's talking and that's the thing it's like that's why hip hop is not a fad.

Khafre Jay: And disco actually went out because disco you had to dress up and have nice clothes to go to it and whatnot you had to have a whole band, and what all this other stuff but hip hop was created by people who had nothing you know what I'm saying, and they turn nothing into everything.

Khafre Jay: Right.

Khafre Jay: And that's why I table that's why that's why it is the largest organizing cultural force that humanities ever created, it will be cool of us to take it back you know because they're rappin in the streets again, right now, the president of Thailand is rapping, they're rapping in Nambibia they're rapping everywhere.

NORMA STANLEY:  Everywhere.

Khafre Jay: You know so so and that's the thing we have to understand that hip hop is not what corporations, you know, make it out to be you know we all know, taco bell you know sucks but we don't get mad at Mexican people because taco bell sucks. right.

Khafre Jay: You know what I'm saying, and I think right now we're getting mad at hip hop culture.

Khafre Jay: Because corporations don't do it right, and I know that our young kids on the ground, regardless of what intersection they're in they're still doing it the same and rapping has never changed on the ground.

Khafre Jay: And hip hop has this nugget of self affirmation, which is why there's all these marginalized communities.

Khafre Jay: falling into it, because it's one of the first time that young kids get to deal with the concept of self affirmation, no matter what, no matter how the Lord built me.

Khafre Jay: You know i'm saying I need to grab this microphone, no matter how the Lord built me i'm gonna move and i'm a rock and.

Khafre Jay: i'm a going to gig you understand, and anybody can own that space and not to mention the fact that that expression is one of the most healing things that you could possibly possibly do.

Khafre Jay: yeah I mean I could just I could proselytize all day about hip hop.

NORMA STANLEY: Well I love it I wish I wish we had more time, but i'm definitely gonna be in touch with you about some opportunities, because you know I just believe that you know there's nothing there's no coincidences it was it was meant for us to meet through Ivette Lopez and and and and we're looking forward to do.

NORMA STANLEY: What we can to help you move your your mission forward I love what your mission says to so thank you so much for taking time out of your busy schedule to be a part of disabled lives matter today and i'm looking forward to continuing the conversation.

Khafre Jay: right on Thank you all so much for having me make sure you all go to hiphopforchange.org or subscribe to our newsletter will keep up to date with the culture, what we're doing and what we need, so we can take back our culture and spread nationwide all right y'all.

NORMA STANLEY: Thank you.

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.

 

S1-Ep27_Bishop_Dedric_Avery

S1-Ep27_Bishop_Dedric_Avery

September 2, 2021

Disabled Lives Matter
Season 1, Episode 27
Co-Hosts: Nadine Vogel & Norma Stanley
Guest: Bishop Dedric Avery (aka Oba Chikelu)

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 with co-hosts Nadine Vogel and Norma Stanley… yay!

NORMA STANLEY: All right.

NORMA STANLEY: Greetings everybody, my name is Norma Stanley I'm co host of disabled lives matter our regular co host ms. nadine vogel couldn't be here today, so I am kind of pitching in.

NORMA STANLEY: and taking the reins on our interview so today, we are going to be speaking with the awesome Bishop Dedric Avery, also known as oba chikelu.

NORMA STANLEY: Who is a scholar and author.

NORMA STANLEY: Someone who I greatly admire, he is the senior pastor of salt and light truth Center, which is based in decatur Georgia and he is a spiritual leader.

NORMA STANLEY: Progressive non traditional type of spiritual leader who shares information with his congregation about empowerment and enlightenment and.

NORMA STANLEY: Other like you know and enrichment, which for my company which is called e-e-e lightning which.

NORMA STANLEY: e-e-e marketing stands for enlightened empowered and enrich we're on the same page in that area, so I am so excited to have him share with us today about.

NORMA STANLEY: You know his experiences um and becoming someone who acquired a disability and how that has changed his life what he's doing.

NORMA STANLEY: To address some of those issues as an advocate Community advocate and as someone who's you know walking the journey now through this whole process so welcome to disabled lives matter Bishop avery.

Oba Chikelu- Dedric: i'm so glad to be here.

NORMA STANLEY: Well, you know i'm and I first met you, you were a young man.

NORMA STANLEY: young man who was doing your thing as a pastor.

NORMA STANLEY: And and.

NORMA STANLEY: You did not have a disability, at that time but since then, you have aquired one this was how many years ago, tell us a little bit about that experience and what happened.

Oba Chikelu- Dedric: um it started.

Oba Chikelu- Dedric: In 2015.

Oba Chikelu- Dedric: I was volunteering at a local high school.

Oba Chikelu- Dedric: In their football program as the chaplain.

Oba Chikelu- Dedric: One of the initiatives the plans that I had was to reach out to the schools and the businesses and different things and create collaboration and I was volunteering.

Oba Chikelu- Dedric: And it was a particular football game on a Friday night, it was I believe September 9 2015 i'm not sure what exactly the date but.

Oba Chikelu- Dedric: The first play of the game I just prayed with the team that they had no injuries or that they'd be covered throughout the game, and the first play of the game two of the players.

Oba Chikelu- Dedric: ran up on the side of the field to tackle one another and they rolled into my legs and that was when my journey began because I heard snap crackle and pop.

NORMA STANLEY: wow

Oba Chikelu- Dedric: and, in my mind psychologically I didn't know what was going on, because I just knew that my knee or something was just sticking out of the out of my skin and it was crazy.

Oba Chikelu- Dedric: It took them an hour to get me off of the football field to get me into an ambulance to get me to another ambulance and.

Oba Chikelu- Dedric: that's when that's when my journey began 2015.

NORMA STANLEY: And one of the things that i'm I was very impressed with the Church, that it was such an accepting um Ministry for people with disabilities.

Oba Chikelu- Dedric: Yes.

NORMA STANLEY: my daughter Sierra is a wheelchair user and I've attended many larger churches that weren't as welcoming um you know to our children, sometimes and make some noise, maybe different things like my daughter sometimes love singing she loved the music.

NORMA STANLEY: As you pull out of her seat and crawl up to the altar.

NORMA STANLEY: To be closer to the.

NORMA STANLEY: Music and a lot of services would nnot accept that so.

NORMA STANLEY: I really appreciated about your service in your ministry um tell us about what that.

NORMA STANLEY: The Church Community when it comes to people with disabilities.

NORMA STANLEY: You would think that would be more what's the word accepting and welcoming should we be feelings were those of us who have children, like mine, feel more comfortable doing services online than being their with the congregation.

Oba Chikelu- Dedric: I would say that.

Oba Chikelu- Dedric: I will say that the teachings of a spiritual Community sets the tone as it relates to the treatment of others and the teachers of our ministry week we focus on accepting and acknowledging everyone unconditionally.

Oba Chikelu- Dedric: It that it's a skill set, you have to develop that and being able to enter the inner act and engage people from different cultures perspectives.

Oba Chikelu- Dedric: Whether they have disabilities mental illness, whatever the situation is we are teaching that every humanbeing is a manifestation of the creator and so when we engage one another we're actually engaging God.

Oba Chikelu- Dedric: And so, when we do that it heightens the level of sensitivity to the needs of people and and I saw that even before I even attain this this new direction of life.

Oba Chikelu- Dedric: You and I had a lot of intensive conversations about what can we do to serve the disabled Community we'd already kind of started doing some things right, I didn't really feel hip.

Oba Chikelu- Dedric: You know, hypocritical by having the injury and being in the Community myself, because I was always supportive of the Community.

Oba Chikelu- Dedric: So the teachings of the environment, really sets the tone for the treatment of the environment. 

NORMA STANLEY: mm hmm. That is important, is it comes from the head and and so you know those are the kind of things that I don't think a lot of ministries realize that they may they may be something that they are not recognizing.

NORMA STANLEY: As the leader of that particular ministry, that is not allowing that opportunity to to open up to those of us children like mine um you know I.

NORMA STANLEY: that's one of the things that will hoping to make some changes in that area from a spiritual component, as well as a Community, because.

NORMA STANLEY: faith is a big part of how parents like myself manage you know if we do a lot of praying and we depend on that that strengthen and that body of people to support and sometimes when you see that they just Basically, it seems, in some cases that i've been exposed to that you know.

NORMA STANLEY: we're more of a nuisance, it seems.

NORMA STANLEY: unwelcomed and that's something that I hope.

NORMA STANLEY: to see change as a they become more aware of how the ministries come off to others like families like mine.

Oba Chikelu- Dedric: You know, society has a way of setting pseudo standards of what's acceptable.

Oba Chikelu- Dedric: In society has is has it all figured out as to how we're supposed to look.

Oba Chikelu- Dedric: You know the size, the shape the whole nine and if anyone doesn't fit in that little scope.

Oba Chikelu- Dedric: Then we are faced with many different forms of reaction and rejection.

Oba Chikelu- Dedric: And, even in the Church, because even though.

Oba Chikelu- Dedric: You really find out what the real purpose of a church is when you have people in need, or have needs and I find that no one wants to be inconvenienced.

Oba Chikelu- Dedric: No one wants to kind of kind of inconvenience themselves for those who have needs you know, are you going to even, even in the scriptures when Jesus was killing they made provisions and they could demand and and brought him down through the ceiling.

Oba Chikelu- Dedric: Minister, whereas you know people won't even open up aisle for a person in the church today, so that tells you just kind of the world we're in and just this is how real this thing that is in the challenge, even in the spiritual houses that the disabled community has.

NORMA STANLEY: Absolutely.

Oba Chikelu- Dedric: Because I never wanted to exploit the situation because you have a lot of ministries, that would.

Oba Chikelu- Dedric: They would bring in disability members, but they will try to set it up for monetizing.

Oba Chikelu- Dedric: You know we're going to get this big grant for the Church, because now we have disabled members, you know as a good way to make some money.

Oba Chikelu- Dedric: And, and I never wanted to do that I never wanted to exploit anything for monetization.

Oba Chikelu- Dedric: Is you know that's not the right heart and that's not of God.

NORMA STANLEY: You know the disabled lives matter podcast is.

NORMA STANLEY: You become a movement, along the lines of you know, black lives matter but to people with disabilities, because there's an intersectionality when it comes to African Americans.

NORMA STANLEY: You know, basically, the 25% of population with disabilities and you know that's a major major component and people are going to have to realize that.

NORMA STANLEY: And there's so much issues when it comes to mental illness and mental health.

NORMA STANLEY: And issues that are not being addressed when it comes to some of these people who are being arrested and and not not paying attention to the fact that they may have some ptsd issues they may have some you know.

NORMA STANLEY: All sorts of issues when it comes to sensory things that they're doing and they're arresting them and end up paying attention so we're just trying to bring awareness to.

NORMA STANLEY: intersectionality of things like that, so that people can be aware and and hopefully make some positive impact and do things differently.

NORMA STANLEY: That could greater enhance enhance the quality of life for.

NORMA STANLEY: Families like mine and people with disabilities individuals as well as families, and I know that that's something that that's very important to you and I know that some issues that you've recently come across since you started this journey just in daily life that.

NORMA STANLEY: You never even thought about probably before could you share a little bit about something as basic as going grocery shopping.

Oba Chikelu- Dedric: Sure um definitely until I became disabled, I was very unknowledgeable i've always been sensitive but unknowledgeable of the reality.

Oba Chikelu- Dedric: of people who are physically challenged until I had to do tasks as simple as going to the grocery store.

Oba Chikelu- Dedric: You know a lot of people take it for granted, why just go over here and pick up some things and go home and it just sounds really easy.

Oba Chikelu- Dedric: But for people like me, I have to plan out the opportunity to go to go to stores, first of all I have to find the grocery stores that have the scooters for people like myself who have impairment in walking.

Oba Chikelu- Dedric: Then you have to find the locations that have the ones that actually work or operable that's another one, because they might have four sitting there, but only one works.

Oba Chikelu- Dedric: So you see that that that particular store or franchise just did what was you know is being asked of them to do.

Oba Chikelu- Dedric: They did the bare minimum, but there's no sense of maintenance no sense of reception no sense of sensitivity of you know nothing you know so.

Oba Chikelu- Dedric: it's very difficult, not only getting the groceries putting them in the car but going home and creating your own independent regiment of how to unload the things that you have.

Oba Chikelu- Dedric: That you bought from the store those little simple things that people take for granted are monumental task for people like myself.

NORMA STANLEY: yeah I can imagine, I know that I had sustained an injury that I don't know exactly where came from it something in my arm and the doctor told me it was um.

NORMA STANLEY: I guess it was something that had come over time because I pick up and puts sierra's wheelchiar in and out of my car, since she was you know, having to use a wheelchair and i guess.

NORMA STANLEY: It wore on my shoulder, and it was very painful and that same thing happened, I could not collect groceries the way I used to and had to be very particular of things that I was lifting and how I lifted them so that I wouldn't reinjure my arm and because I need I need everything to pick up sierra's wheelchair.

NORMA STANLEY: And you know you don't think about these things, and those are some of the things that.

NORMA STANLEY: they're trying to generate awareness about through disabled lives matter i'm the kind of business that nadine vogel of springboard consulting as she does i'm.

NORMA STANLEY: Working with companies to understand the workforce and the marketplace when it comes to people with disabilities and the kind of work that I do of.

NORMA STANLEY: multicultural communications, and you know and helping companies understand diversity equity inclusion and we both have a similar.

NORMA STANLEY: mission in you know, helping people understand the viability of this community and why they need to be paying more attention to making things.

NORMA STANLEY: Better because of who we are as a population and how important we are to the population anybody can acquire one at any time, so you can't ignore.

NORMA STANLEY: This population we're gonna take a quick break and then come back and talk a little bit about you know some of the things that that you're doing as an individual in through your ministry and just continue the conversation with bishop dedric avery.

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

[COMMERCIAL]
Hi, I'm here to talk to you about springboards. 2021, 7th annual disability connect forum, save the date. It's happening Tuesday, September 14 via live stream, you know, we tag the phrase, quote unquote, We Are Better Together. Why? Because together we can achieve change, especially since this forum focuses on the intersectionality persons with disabilities. The lgbtqa+ community and Veterans, the major issues impacting these constituents and more So join us for the conversation again, the 2021 disability connect Forum livestream, Tuesday, September 14th, to learn more. Purchase a ticket and register visit w-w-w consult springboard.com. Front slash 2021 - disability - connect Front / hashtag. Welcome. Can't wait to see you there.

Voiceover:  And now back to our show.

NORMA STANLEY: All right, and we are back speaking with Bishop Dedric avery, also known as Oba Chikelu, and like I said he has a very.

NORMA STANLEY: Non traditional church ministry in decatur Georgia and i'm I am actually one of the Members and I just you know wanted him to share because there's some and i've been to some large churches in the mega churches that i've been to some small ones and.

NORMA STANLEY: Some of them have not been as as as welcoming and and that was something that drew me and it drew my daughter, because I can tell when she's not comfortable.

NORMA STANLEY: And she can she can tell when people don't make her feel comfortable she lets me know, and so you know, so this particular you know the space at.

NORMA STANLEY: salt and life truth Center provides is something that you know I would love for families to experience and you know the families.

NORMA STANLEY: stay home because we don't want to we don't want to bother anybody, and some of our children, make a lot of noise when they are having fun when they are enjoying themselves just noisy they can't help it they that's how they express themselves, they do things that are not what.

NORMA STANLEY: Typical children would do and i've come across a lot of situations we have heard some horror stories with churches have actually put member that have put children like mine out.

NORMA STANLEY: um you know and things i've heard some stuff I mean you know lived experiences of people who, I know, so you know so it's very important to me to try to make an impact.

NORMA STANLEY: For to the just the work that you're trying to do with the Community to change change the mindset and the approach some ministries have to people with disabilities.

NORMA STANLEY: The younger ones.

Oba Chikelu- Dedric: yes.

Oba Chikelu- Dedric: Once again, we have to realize that we're in a new paradigm is a paradigm shift and I always say this so that people can truly understand what's being said.

Oba Chikelu- Dedric: there's a reset that's happening, you know with the shutdown and the virus that we have and some of the things that have been ushered in.

Oba Chikelu- Dedric: It's the transitioning.

Oba Chikelu- Dedric: And the way things have been done, the institutional mindsets are there they're going out they're phasing out people are more independent and and thinking they're more.

Oba Chikelu- Dedric: focused on self care growing trying to figure out things they've taken advantage of opportunities of seeking counsel.

Oba Chikelu- Dedric: Life coaches and different things, because people are tired of.

Oba Chikelu- Dedric: being stuck and and one of the things that comes with that is the revolutionary mindset of how we are to see humanity.

Oba Chikelu- Dedric: The way we see humanity is is is a lot more upgraded than it was before.

Oba Chikelu- Dedric: People are starting to foster more mutual respect for one another, you see a lot of organizations that are in activism and advocacy for the small person.

Oba Chikelu- Dedric: And we, we see a new.

Oba Chikelu- Dedric: Interest infrastructure being created.

Oba Chikelu- Dedric: it's in this small stage which is growing it's going to grow even more, because when you look at the disability community, it is really a force to be reckoned with.

Oba Chikelu- Dedric: But they don't acknowledge it because it does not produce revenue does not produce an eco economic.

Oba Chikelu- Dedric: influence, and I would say that's, the main thing.

Oba Chikelu- Dedric: Because they're more disabled people than there are probably any other group of people in America at least.

Oba Chikelu- Dedric: But we don't produce the economic strength that will make the legislators or anybody else really look twice matter of fact, they are putting money into the disability community and they see it as a liability in many cases.

NORMA STANLEY: and that's because they don't understand that the monetary value, because you know just in the U.S, alone, their are 64 million people in the US alone, you know with disabilities and you know 1.3 or so billion people around the world, but the economic when you when you add their friends their friends and family network.

NORMA STANLEY: that's huge you know when you talk about globally, that's like eight trillion dollars.

NORMA STANLEY: mm hmm I mean you know, and when the US I forget about eight I forget what the is what isn't us but globally is about 8 trillion 

Oba Chikelu- Dedric: wow 

NORMA STANLEY: when you add the family and friend network.

Oba Chikelu- Dedric: Right. 

NORMA STANLEY: and you know, we are all over the world and it is a lot of money there they just have not figured out how to focus it because they didn't understand that about the black Community either or the Hispanic community.

Oba Chikelu- Dedric: Right.

NORMA STANLEY: So we started getting really vocal about the fact that we need to be included and that's what the disability community is doing now, and very vocal.

NORMA STANLEY: about being included and that's where they're starting to listen it's still not there, what they need to be starting to listen and pay attention, which is what we have to do.

Oba Chikelu- Dedric: Any movement, you have to assess the what if, as you approach the power structure and speaking truth to power to convince them of the need of this group that's that's in activism.

Oba Chikelu- Dedric: You have to present the case that if we were to come together in unity and do this, this is how would it impact, the bottom line.

Oba Chikelu- Dedric: of your structure you know if we can ever come together and have unified efforts but there's a lot of division even how they perceive the disability community.

Oba Chikelu- Dedric: You have the profound, then you have those who are functional you have so many different types of when you have even in your in your retail settings you have four handicapped parking spots, but you have a parking lot full of handicap stickers.

Oba Chikelu- Dedric: You know, so what is truly disable you know what is truly a true member of the disability community, and so, when you are able to even define that it will probably bring bring some definition to the struggle.

NORMA STANLEY: And not unification is definitely going to be important and that's one of the things that we're trying to help generate awareness about because, again, the.

NORMA STANLEY: various factions is you know down syndrome community and there's the autism community and the.

NORMA STANLEY: cerebral palsy community in the mental health community and but it's one Community is the visible and the invisible and it's but it's really one community.

NORMA STANLEY: And what I find sometimes is that you know each community content okay autism, is where everything is when you hear disability it's were you go to automatically.

Oba Chikelu- Dedric: right right.

NORMA STANLEY: And, and that is something that usually always bothered me  becuase.

NORMA STANLEY: My daughter has cerebral palsy. You know.

Oba Chikelu- Dedric: It depends on which wealthy people have children that are affected.

NORMA STANLEY: that's true too that where the attention goes.

NORMA STANLEY: A lot so it's a struggle and it is almost an uphill battle, but.

NORMA STANLEY: that's life and you just have to keep struggling and pushing pushing past the obstacles, which is what you know shows like disabled lives.

NORMA STANLEY: matter podcast is trying to do, push past the obstacle and talk about opportunities that people with disabilities are bringing to the table and and contributions that they are bring to the table that.

NORMA STANLEY: General media tends not to talk about as much, there are some people in the Community, what so powerful amazing things the A-D-A came to because of revolutionaries.

NORMA STANLEY: that's right, you know judy heumann and the people who bought for and crawled the steps you know when they couldn't walk to the protest, so it could come into to being if you saw the the the netflix documentary crip camp if you haven't seen it check it out.

Oba Chikelu- Dedric: Oh crip camp, okay.

NORMA STANLEY: crip camp that's where it all started at a camp, some of those counselors who worked as counselors at Camp called camp Jened

NORMA STANLEY: Who moved into activists for the A-D-A.

NORMA STANLEY: And so it's a powerful of powerful movie but you know i'm excited about you know, like I said just knowing the fact that.

NORMA STANLEY: becoming a leader in this area and and working towards the goal of making positive change, which is what we're trying to do an individual areas.

NORMA STANLEY: So tell us you know, in addition to being a pastor you also an actor, you also a businessman tell us some of the areas that you would really like to make some impact as you move forward.

Oba Chikelu- Dedric: Uh listen everything that i'm about of I first of all want to put my emphasis on modeling.

Oba Chikelu- Dedric: The reality of a disabled person in a victorious state.

Oba Chikelu- Dedric: A person who is definitely persevering through the disability to produce and maintain a certain excellence in life.

Oba Chikelu- Dedric: to kind of regress a bit when I initially was told by my doctor that I would never be able to walk again in the normal normalcy of other people, I had to make a decision at that time whether to quit roll over die or to fight.

Oba Chikelu- Dedric: And I realized that in many of the things i'm involved in i'm in leadership and people are watching how I negotiate.

Oba Chikelu- Dedric: My the things that I do you know how I handle things and.

Oba Chikelu- Dedric: Just just just that whole strength piece.

Oba Chikelu- Dedric: So you know with with the with the spiritual Center it's the same thing teaching, but then modeling perseverance showing people how to maintain.

Oba Chikelu- Dedric: Who, you are in the midst of challenges, not losing your composure losing your perspective or your worldview because of what's going on in your life and then even as a writer.

Oba Chikelu- Dedric: That deals with that.

Oba Chikelu- Dedric: I happen to be consistent as well you know going to the meetings and being visible in in in and showing that you are just as functional as anybody else it takes a little bit more effort but that's part of the fight, you know.

Oba Chikelu- Dedric: The fact that you have to show up for the fight, you know.

Oba Chikelu- Dedric: I go to the water aerobics for therapy.

Oba Chikelu- Dedric: I go to strength training with my personal trainer just trying to be functional and fight the fight, you know and show people.

Oba Chikelu- Dedric: That regardless of what is happening that I have a strong mental perspective and optimistic perspective as to how to still get the results in life and fulfill your mission and assignment.

Oba Chikelu- Dedric: You know, without quitting or showing that you know you can handle the situation.

NORMA STANLEY: I agree, I when people are always telling me how strong I am and they're so amazed it's like you know i'm not doing anything else other than trying to have my daughter have the best life possible so it takes a little bit more work because she's full care.

NORMA STANLEY: But I don't want her to miss out on anything so i'm not doing anything more than any other mother would do.

Oba Chikelu- Dedric: But I would tell you norma, you are a source of inspiration for a lot of people, the fact that you commit your life, to make sure that your daughter had a normal life.

Oba Chikelu- Dedric: You sacrificed and now you're at a place where you are operating in your endeavors but you still you didn't leave the first love.

Oba Chikelu- Dedric: Even though you're doing your your businesses and different things but your heart still goes back to your daughter, and the disabled community, so you are to be honest, if I have flowers right now given to you right now.

Oba Chikelu- Dedric: You certainly.

 

NORMA STANLEY: Youknow  just do it, you know that's what my heart to do and and and that's what I believe my purposes is to use my gifts and talents and skills, whatever those are.

NORMA STANLEY: to generate awareness about this Community, and all that it brings to the table and it brings some powerful talents and abilities and skills and contributions that people don't talk about people in that really sharing and we need to just need to know.

NORMA STANLEY: I was just talking with Ivette a bit earlier about the.

NORMA STANLEY: The the Paralympics were not part of the Olympics, they weren't shown on TV.

NORMA STANLEY: yeah, why not.

NORMA STANLEY: Right it doesn't make any sense.

NORMA STANLEY: Those people work really hard to train.

NORMA STANLEY: They want to be seen to.

Oba Chikelu- Dedric: That's right. 

NORMA STANLEY: And they didn't make a point to show them and that's just unfortunate so those kinds of thing's just have to change.

Oba Chikelu- Dedric: What would have to happen is the regular Olympic athletes would have to to go into activism for that.

NORMA STANLEY: yeah.

Oba Chikelu- Dedric: On that level, they will have to be sacrificial to say hey we're not going to do this until you do that for for that Community as well.

Oba Chikelu- Dedric: I don't know if anybody ever think that big, but it would have to be people that will stop the process of the regular Olympics, so that will give attention to the spectrum, from.

NORMA STANLEY: Which is what's happening now, unfortunately with the whole what happened to George floyd and everything and now people are starting to realize that racism really does exist and we need to make some changes in our with.

NORMA STANLEY: The police policing and things like that, but it was always there, but until people started saying, people who are you know, not necessarily us started saying.

NORMA STANLEY: yeah this is real and we have to address it i'm nobody was really listening and so yeah you probably.

NORMA STANLEY: right, you probably need some people who are not actually who don't necessarily have a connection to the Community, but want to help make some things those of us who are making the most noise have a connection to the community already.

Oba Chikelu- Dedric: Yes, it has to be people who are afluent away from the community that has a heart for the struggle to make more of an influence, because if the athletes.

Oba Chikelu- Dedric: boycotted or were very vocal or had some type of unified commemoration to give attention to the special needs in the Olympics.

Oba Chikelu- Dedric: Then it would be more powerful powerful and it will be heard, but if you're dealing with the the powers that be they're going to see how can we make more money if we can't make money from it, if you cannot.

NORMA STANLEY: It all comes down to economics.

Oba Chikelu- Dedric: comes down to economics, you know who wants to see little Johnny run across the field or miss Sarah with no legs do gymnastics you know and look at it, with the right mindset, not as a spectacle, but as competition on a special level.

NORMA STANLEY: level that.

NORMA STANLEY: Most people would never be able to do and so many again athletes who are just accomplishing such amazing things but.

NORMA STANLEY: When you have situations like you know Simone biles being ridiculed because she had to take a mental health break as fantastic, as she is the typical athlete it's a growth it's a it's an education and growth process that we just have to keep moving towards and.

NORMA STANLEY: And it's just the way it is.

Oba Chikelu- Dedric: That, I want to bring out the fact that.

Oba Chikelu- Dedric: Me being a veteran.

Oba Chikelu- Dedric: When people see me walk into a room know that i'm a veteran and not knowing what happened to me it seems to be more uplift and respect.

Oba Chikelu- Dedric: in thinking that that was something that was acquired in the military service.

Oba Chikelu- Dedric: So if you're disabled by military service, it seems to be a whole different world view and value as it relates to a person that civilian with a disability, the value in your stock goes down.

Oba Chikelu- Dedric: So when they find out it wasn't a military service related situation they go, oh okay.

Oba Chikelu- Dedric: You know.

NORMA STANLEY: And it should not be either one.

Oba Chikelu- Dedric: yeah but that's the way people process this yeah yeah.

Oba Chikelu- Dedric: like, if I were my veteran hat and go anywhere and they see me with that Walker they are just they want to salute me.

Oba Chikelu- Dedric: I get that open the doors for me, I get smiles it's like every day is Memorial Day and fourth of July, you know what i'm saying you know veterans day.

Oba Chikelu- Dedric: But when I take that hat off and become a civilian i'm just that the guy with the Walker and let's let's help him out because they don't open the doors for me, because they care for me, they want to make sure I get out of the building without falling for lawsuit.

NORMA STANLEY:  wow.

Oba Chikelu- Dedric: You can feel the spirit of the treatment of the people, oh, let me help you why do you want to help me, are you helping me because you want to make sure your policies and procedures are right, if I fall.

Oba Chikelu- Dedric: Or do you really care about me, you know these are things that psychologically, we have to deal with, and you have to be strong.

Oba Chikelu- Dedric: Because people treat you many different ways, when you leave the four walls of your home you go into this world that has so many perspectives you're going to be met by many of them within the course of eight hour day.

NORMA STANLEY: Absolutely and and that's where faith and a spiritual foundation like I said it's always something that I fall back on.

NORMA STANLEY: And so you know, at the end of the show but i'm happy to share some people some you know where they can reach you how to keep in touch with you at salt and life truth Center and need some more information.

Oba Chikelu- Dedric: salt and life truth center's in decatur Georgia, the address is 2622 snapfinger road decatur Georgia 30034.

Oba Chikelu- Dedric: We have a website is the.

NORMA STANLEY: www.sltcempowermentzone.com

Oba Chikelu- Dedric: That way you can find out more about us and learn more about us, but please come we have services in the building twice a month, the first Sunday is at 9am the third Sunday is at 10am and we also have a Teleservice that we have on these on the second and fourth Sunday.

NORMA STANLEY: that's right, so you guys it's an awesome awesome ministry and i'm thankful to be a part of it, and I just wanted to have Bishop avery share.

NORMA STANLEY: Some of His story, because I think it's something that people need to understand because there but for the grace of God, for all of us all of this and all it takes we're all just one incident away.

NORMA STANLEY: from being a part a member of the disability community and that's just a reality, so thank you for taking time out of your busy schedule to be on disabled lives matter and we'll be talking with you again soon.

Oba Chikelu- Dedric: Thank you so much, I appreciate the opportunity for being on here today.

NORMA STANLEY:  Thank you.

Oba Chikelu- Dedric:  See you later.

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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