#119: In this episode, I sit down with Dr. Jessican Hissam whose story not only inspires, but also educates and empowers. Dr. Jessica Hissum is such a figure, and in our latest episode, her journey from a misdiagnosed newborn to an ardent advocate for the deaf community captures the essence of resilience and change. With the poise of a seasoned public policy specialist and the warmth of someone who’s walked the talk, Dr. Hissum recounts her personal experiences with deafness, the criticality of early pediatric hearing screening, and her transition into a vocal champion for those facing similar challenges.
As a beacon for advocacy and a testament to overcoming communicative barriers, Dr. Hissum’s narrative embraces the complexity of navigating the education system, the nuances of deaf identity, and the stark realities of living with a disability in an able-bodied world. Her expertise isn't limited to advocacy; as a physical therapist specializing in pelvic health, she brings to light the intersectionality of healthcare, advocacy, and disability, sharing her insights on incremental therapy and the power of storytelling in enacting systemic change.
This episode isn't just a dialogue; it's a rally cry for equitable access and representation, a deep dive into the transformative impact of technology (such as the cochlear implant), and a stark look at the ongoing struggles within the disability community during the trials of COVID-19. With Dr. Hissum at the helm of the Center of Advancement of Next Gen Deaf, we explore the future of deaf advocacy, the challenges of next-generation cochlear implant services, and the unyielding spirit required to push for inclusive policies and better resources. So, tune in and be part of a conversation that's not just about listening, but also about being heard.
Find Dr. Jessica Hissam here:
https://www.instagram.com/cangdeaf/
https://www.instagram.com/jess.hsquared/
jhsquared.social@gmail.com
Transcripts found here:
https://babblesnonsense.buzzsprout.com/1589188/14560490-breaking-the-sound-barriers-a-journey-of-deaf-empowerment-and-resilience-w-dr-jessica-hissam
Follow me on social: https://www.instagram.com/babbles_nonsense/
#119: In this episode, I sit down with Dr. Jessican Hissam whose story not only inspires, but also educates and empowers. Dr. Jessica Hissum is such a figure, and in our latest episode, her journey from a misdiagnosed newborn to an ardent advocate for the deaf community captures the essence of resilience and change. With the poise of a seasoned public policy specialist and the warmth of someone who’s walked the talk, Dr. Hissum recounts her personal experiences with deafness, the criticality of early pediatric hearing screening, and her transition into a vocal champion for those facing similar challenges.
As a beacon for advocacy and a testament to overcoming communicative barriers, Dr. Hissum’s narrative embraces the complexity of navigating the education system, the nuances of deaf identity, and the stark realities of living with a disability in an able-bodied world. Her expertise isn't limited to advocacy; as a physical therapist specializing in pelvic health, she brings to light the intersectionality of healthcare, advocacy, and disability, sharing her insights on incremental therapy and the power of storytelling in enacting systemic change.
This episode isn't just a dialogue; it's a rally cry for equitable access and representation, a deep dive into the transformative impact of technology (such as the cochlear implant), and a stark look at the ongoing struggles within the disability community during the trials of COVID-19. With Dr. Hissum at the helm of the Center of Advancement of Next Gen Deaf, we explore the future of deaf advocacy, the challenges of next-generation cochlear implant services, and the unyielding spirit required to push for inclusive policies and better resources. So, tune in and be part of a conversation that's not just about listening, but also about being heard.
Find Dr. Jessica Hissam here:
https://www.instagram.com/cangdeaf/
https://www.instagram.com/jess.hsquared/
jhsquared.social@gmail.com
Transcripts found here:
https://babblesnonsense.buzzsprout.com/1589188/14560490-breaking-the-sound-barriers-a-journey-of-deaf-empowerment-and-resilience-w-dr-jessica-hissam
Follow me on social: https://www.instagram.com/babbles_nonsense/
What is up everyone? Welcome back to another episode of the Babel's Nonsense podcast. I am beyond excited for today's guest. Her name is Dr Jessica Hissum. If you do not know her, I feel like you should know her and Hopefully, by the end of this interview, you will walk away wanting to know more about her and her calls.
Johnna Grimes :She is a deaf advocate, public policy specialist, executive director of Center of Advancement of Next Gen Deaf, which is a nonprofit Organization that advocates for the deaf community, their families and professionals who care for them.
Johnna Grimes :She also has a doctorate in physical therapy, where she focused on pelvic health, sexual trauma and so much more. In this interview, she teaches me all about how she was born deaf, how she was mixed diagnosed at an early age, the importance of the neurobiological window with the development of language and how important it is for pediatric hearing screening. We also discussed the deafness spectrum and discrimination within the deaf community, and how we can all educate ourselves to become advocates for the deaf community. So, without further ado, let's just dive on into the interview and welcome up doctor Jessica Hissum to the show. I am beyond excited to have Dr Jessica Hissum here today. Not only is she a deaf advocacy and a public policy specialist, but I found out a little bit about her background yesterday and she's also a physical therapist that specialized in pelvic health, sexual trauma and all of that. So we got a lot to unpack here.
Johnna Grimes :We do so. I'm so excited that you're here. Kristen Bernard, actually from Coates Day Fam, is the one who pointed me in the direction of your pod or your Instagram, because I had not heard about you, and she was like go look at this girl's Instagram and tell me what you think. I think she would be perfect for your podcast. And as soon as I started listening to yourself, I was like, oh my god, I have to have her on.
Dr. Jessica Hissam:Well, thank you, honor, and thank you to Kristen too. She's a very dear friend. I've enjoyed getting to know her when I did some work with her too.
Johnna Grimes :She's sweet, I love her, I've had her on, so Obviously we got to start from the very beginning. So, guys, this podcast and I've already told Jessica if I say anything that could become or sound offensive, it's literally just my ignorance, see, and I want her to correct me because I'm not trying to offend anyone I'm really trying to learn more about the deaf community and just because I am a nurse practitioner Does not mean that I have been taught how to Learn or navigate this. So I'm actually very excited to learn and navigate this being in the healthcare field. So you we were talking earlier. You said you were actually born deaf.
Dr. Jessica Hissam:Yes, I was born deaf, so I was born with bilateral sensing, neural, profound and severe hearing loss and I really wanted to hit a point and I absolutely agree with you. That's one of the things I see as a healthcare provider and now policy specials and flip side. We don't treat hearing loss as emergency and urgent, just like the way if you start losing your vision it's automatically an urgent like we start to figure out why you're losing your vision and stuff and we don't treat hearing loss the same way. So I think that's part of the medical model in general that we just don't educate well enough, we brush over it and like I even remember we brushed over it and physical therapy school when I was getting my doctor- Right and check with some my scope of practice.
Dr. Jessica Hissam:I get that, but I think it's because quotation marks not in your scope of practice to know about hearing loss, because people defer to an ENT or a Audiologist who works with a physician, you know.
Johnna Grimes :So I think it's really interesting that you bring that up and well, we, all we learned was like, like you said, there's sensor all, and then I forget the other one.
Dr. Jessica Hissam:There's like two different sense roll, there's conductive and there's mix and there's another category, but I can see the word and I'm not gonna be able to say it.
Johnna Grimes :But we learned in the sense of like here's the different types of hearing loss and we well since I'm acute care and geriatric Entology we learned about it for the geriatric population, not the pediatric population. So, since you were born deaf. How did your mom Know there was something wrong? Like yeah? When did she realize?
Dr. Jessica Hissam:so and that's really interesting that you bring up, because when I was born so I was born in 1993, I'm 30 and new born hearing screening actually was not mandated at the time. It actually didn't really get mandated till 2000 which is what my sister was born.
Dr. Jessica Hissam:I know, but you don't think about how long we've come, but how yet far we got to go. So for my mom and it's one of the things that I see over over again is mom's intuition is really good. Yes, and so for her. For me, I was very responsive to touch and to light and stuff. But she, for example, put me on the floor with my toys and stuff, be like I'll be right back, I'm gonna go grab something in my room, and I would freak out and at first she was trying to figure out and she would call me from Like Jess, I'm still here, like I'm okay, like you're okay, I'm coming back, you know.
Dr. Jessica Hissam:And she started pick up on different little cues. But that's one stories that she shared me and she started to suspect that I did have hearing loss, just based on Especially that first three months on postpartum when she had me and was raising me with my dad. But she was the main caretaker of her home, so there were just little hints for her. So she took me to the pediatrician and, like I said, newborn hearing screening was not a thing yet. So she was like I think this child has hearing loss, like I need a hearing screening, he's like and what he would do is a pediatrician, which is what a lot providers do is the clap test.
Johnna Grimes :Yeah, I know, yeah, yeah you see that.
Dr. Jessica Hissam:But if you think about it, if you do a clap test, where you clap, your hands behind a child. It's from behind okay, I think about if you clap from behind. You got the win.
Johnna Grimes :Yeah. So one like you say, if you, I well, I don't know, because I haven't had any issues, but like they say, if you've lost your vision, lost your hearing, your other senses are heightened. So your sense of touch probably was more heightened.
Dr. Jessica Hissam:anyways, yep and vision as well for a bit. So mom eludes that it was light and stuff. But they did the clap test and then she he's like oh, she has hearing, like she'll be fine, like and stuff. So mom was like okay, and within I want to say I think a month later she came back in. At this point she was like okay, I am requesting as a parent, I need a hearing screening or I need a psych Exam for myself because I'm crazy.
Johnna Grimes :Well, I'm honored, your mom. Yeah, like that I mean to fight and advocate in that way in healthcare. Not only, yeah, I mean people are learning now to advocate for their, for themselves and their children. But before, I feel like in 1993 that was not even a thing to advocate. No what the doctor said was what, what, what it was.
Dr. Jessica Hissam:Yeah, and I would agree with that and. But he was empathetic and he was kind who's like, okay, okay, we'll get to a hearing screening. And then of course she's glad she followed her gut and hearing screen came back. But I was actually misdynosed.
Johnna Grimes :And that's a whole another part of our story. I was about to ask, like, how do you even do a hearing screening on an infant, because they can't tell you.
Dr. Jessica Hissam:If they can hear something, it's called an ABR and I would highly recommend working for audiologist to understand that but, it's what you see ABR. I can't remember what stands for exactly, but it's called ABR. Okay, and there's another test called OAE. Those are the two primary hearing tests, but they test how the ear responds from a nerve standpoint.
Johnna Grimes :Does that make sense?
Dr. Jessica Hissam:It's simple, it's not painful, but you have. The baby has to be asleep. So, we tell people and to prep them for their hearing screenings and this is what I've worked with my audiologist friends. It's ideal to let the baby starve and then, if feed them we get to the office, they fall asleep post feeding Gotcha, so that way they could be still enough for the Not remember ABR. Autory. Brainstem reflects. Okay so, because we have to look at the reflects there and that's part of a hearing loss assessment right on severity of loss and it helps define what type of hearing loss as well.
Johnna Grimes :So, okay, so then you you get the hearing screening. They find out what you just said you're a misdiagnosed. You remember. So how did, what did they?
Dr. Jessica Hissam:misdiagnose you with and this is where I stand that there's a difference between adult audiologists and a pediatric audiologist. So the audiologist we saw was somebody who primarily saw adults and maybe five percent of the time Pediatrics. That makes sense and there's certain tell tie, tell tail signs that you see in an infinite, that you have to look More in terms of body language, of reflexes, that you would see an adult and I can attest to that, because that is the one reason I chose not to do family practice and I went respect.
Johnna Grimes :I went acute care Gerontologies, which is 14 years and up, because children, to me, are the hardest thing. They can be crying. You have no idea why they can't tell you and I'm just like I don't want to miss it.
Dr. Jessica Hissam:I don't want to miss it. I'm a pediatric like in theatrics they have. Like it's, they have the whisper they do. I'm talking about like it's just a test, it's innate.
Johnna Grimes :It's innate in them. They were born with it and I'm just like I'm so thankful for them. Yes, yeah, I'm like.
Dr. Jessica Hissam:Thank God Somebody wants to do it, because I cannot, yeah so so fast for, I guess, to help us with when I was appropriately diagnosed. So One of the reasons that my family does a lot in the advocacy realm of wrong-profit, which we'll get to that is because my mom thought tooth and nail basically for the services and that need it and everything, because she took the time To do all her research on her own and figure out like what are my options if you have a child of hearing loss who, as At the time quotation marks deaf as I was, which was modern, severe was my original diagnosed and I said earlier my actual diagnosis profound, severely deaf.
Dr. Jessica Hissam:So we did not find that out till we flew to Pennsylvania and I'll get to that story, but wow, one of the things that people don't realize is, when you have a child with a disability, regardless of type of disability, your state is required to set an earlier prevention provider to you.
Dr. Jessica Hissam:Oh, I didn't know that in that disability realm and they're supposed to help you navigate your source, resources, your options, and it should be unbiased. Is that free? It is okay. Okay, yeah, it's part of state because it's federally funded good Feli, and state funded both. It's under federal law. It's known as child finder Okay, and if that may bring a bell for some health care providers, one about that. But it's called child finder and it relates to law, especially part C and ID.
Dr. Jessica Hissam:Okay if you want to know, and some other things too. But so our earlier invention actually came to my family's house and my mom had done a research and everything she understood that Options would be as a child could have hearing aids and learn how to listen and speak. You can learn sign language too. There was different ways. There's total communication, like there's a lot of options. So she did her research. So she was like okay, she's like, and because she was a first-gen, she's first-generation American from Germany. Oh yes, so she grew up at a time point in Germany and she understood language acquisition because she lived in Germany from ages four to ten and when you look at the language acquisition windows, we know that earlier is better to be bilingual in different things.
Johnna Grimes :Right, and at the time, to not to interrupt you, but, like America, is the only country that does not teach bilingual at an early age.
Dr. Jessica Hissam:Every other country teaches two, three languages and, but it depends on the system, I think. And, but you also have to look at our countries. They have a lot more different languages within the same country.
Johnna Grimes :It's more border. So I think that's how I feel like we should at least, on minimum, learn English and Spanish.
Dr. Jessica Hissam:I agree with that, especially in this country. So, but so I agree with spoken bilingualism and by leasing for deaf. But the problem is that a lot of people don't realize it's the service and supports and the system set up in place which is the reason why America doesn't do a good job teaching.
Dr. Jessica Hissam:Or is not cable at this point, teaching a bilingual spoken language, right? So so what happened was with the earlier invention provider is. They came in and they told my parents You're only options to send your child to the school for the deaf and you going learn American Sign Language. There are no options, no other choices for her. And mind you that the ent that she was at when they found out that were deaf, they had told her to expect. The expectations were your daughter will only pass, will not pass a fourth grade reading level. She will not pass high school. You just need to accept that she'll sign. There will be no other options for her. So that was part of what fuel my mom's research. She's like surely can't be this only thing, because that's the expectation and that was. That's still some of the expectations that we see.
Johnna Grimes :But I was about to say, but even like I'm almost going to cry because like, thank that, thank god for your mom, because if she had not advocated for you, I mean you're, you're a damn doctor, like you know, like you went to school for physical therapy and like you're doing all this advocacy work, like that is like truly, like I'm literally gonna get emotional. That is amazing.
Johnna Grimes :Thank you and like thank you, if you're, if your mom is listening to this. Thank you to her mom for like just being that advocate and pushing forward when somebody said no.
Dr. Jessica Hissam:Yeah and um, and that no was a hard no to the point that, um, when my parents had told them, they're like, okay, we would like to learn and teach our child spoken language because that's our natural language of the home. And that was the reason that we didn't learn sign growing up, because it was not our natural language of the home and my mom understood what it took and we did have any resources up in north alabama to learn.
Johnna Grimes :And I was about to ask you that do you know, like, if, let's pretend, your mom chose to go asl sign language, how long does that teach? Like? Because obviously she would have had to learn that, your dad would have had to learn that Before they could even teach you that so well so it's the way we see it, um the way that when I work with families, I'm not an expert with american sign language.
Dr. Jessica Hissam:I went to preface that, but when I've worked with people who are teachers for the dab earlier pension providers it's like a coaching process that makes sense. So, um, I would say a great comparison, like for some people. Think about it. Let's talk about families whose main language is spanish, um, and they're trying to learn english. So for them, the child is basically in a program where they're learning english all day and then learning spanish at home.
Johnna Grimes :Right, so if that makes sense, Well, because I said, I've tried to learn spanish before on my own, like with these, it took me a long time and for a child because of language acquisition, windows and stuff.
Dr. Jessica Hissam:We are more adaptable, where we can learn quicker, that makes sense.
Dr. Jessica Hissam:Yeah, the research shows there, um, and there's some good research related to bilingual, with um, listening and spoken language and ASL, even though people feel like it's very different. But if you think about coaching parents with language and helping parents understand if your child wants a certain language, you have to do what it takes, and that's where the problem is. There's a lot of misinformation from both sides. I will absolutely testify that that it's easy to do, but people don't take an account of parent energy and everything, which is exactly what my mom did Because, like in North Alabama, we did not have a resource for us to be immersed into the deaf community and there was actually no like one one classes at all, and that their solution for my parents to learn sign language was to send a instructor once a month to our house for only 15 months.
Dr. Jessica Hissam:And that's not language acquisition because any type of language you have to acquire, you have to be fully immersed into language, which is what my mom understood when she lived in Germany her life. So that was part of her reasoning, and the thing that made our story challenging for us is the earlier invention provider basically told us we will not support you.
Dr. Jessica Hissam:That was the drag worst from them to us because we were trying to pursue spoken language with hearing aids and it wasn't. My parents are anti-SL but they're like we don't like the outcomes because also the outcome for the school for the deaf, at times fourth grade, ring level graduate and it still is today.
Johnna Grimes :And where is the school of deaf?
Dr. Jessica Hissam:It's in.
Johnna Grimes :Tallie ago, so then you would have had to have moved.
Dr. Jessica Hissam:Yeah or they. It was a boarding school at the time, oh so then yeah. They'll be raising me and they wanted to raise me Right like what and your parents are like.
Johnna Grimes :No, I want to keep my child with me.
Dr. Jessica Hissam:And it's okay. There's some things that move there have a great community. It just depends, you know. But it does kind of point out the systematic differences that you see sometimes like because learning to acquire a language and different things as well, if you don't have resources which in your own city, which is what you should by law that makes sense. Regardless of the path you choose, people have to do things to extremes or have to relocate, often just to find the right services and supports for their child, and I see it all the time across the whole disability spectrum.
Johnna Grimes :That's very sad. Yeah, that is very sad.
Dr. Jessica Hissam:Yeah, so I especially rural countries get, rural cities get way harder, because they're usually the only person or the only family that may have a child with disability of any type of disability within the rural area, and I know families who drive like three to four hours to go get support.
Johnna Grimes :And I was gonna say what about cost has to come into play at that point, because, like sure, if you're a family that could afford to move or to drive or to hire a translator, you're gonna be better equipped versus someone like you said. Like what if someone's born in a poor community where they don't have a car, they can't drive somewhere or and that's all the layers of the fact issues as well.
Dr. Jessica Hissam:Yeah, and in fact, huntsville did not have any thing for speech pathology with the way that I needed it and Co-Quent spoke, but we'll get to that in a second. So we found a wonderful speech pathologist who was willing to work with us, but she realized that and she had guys even back then that I was not diagnosed correctly and because of her I was wearing hearing aids. I was wearing the most powerful hearing aids you could find on the market at the time, which is very like, I would say, maybe middle ground today. Okay, that makes us because tech's improved, you know, and that speech pathologist looked at my parents with like I think you should go into Pennsylvania and do a two week immersive, intensive auditory verbal therapy immersion, which is what. So auditory verbal therapy is a type of speech therapy, but I say there's traditional speech therapy where you're working for articulation and other important aspects. Auditory verbal therapy focuses on the need to learn your auditory pathways in order to acquire a spoken language which is not as listening and spoken language today.
Dr. Jessica Hissam:Like it gave the birth to that. Anyways, we ended up flying only to Pennsylvania and we got diagnosed by one of the best pediatric audiologists on day one, based at my parents' day one. My parents had done this. They're like okay, this is our Hail Mary. You know we're already learning a few signs, we're doing some stuff, but this is our Hail Mary, just to see is spoken language actually a valid option, because by its point I was one and a half so I was still young enough and I knew how important those windows were to make sure I have any shot at any language at all.
Johnna Grimes :And I'm kind of dumb when it comes to like the milestones of kids, because never when do kids typically start speaking.
Dr. Jessica Hissam:As young as well, so speaking as in babbling and stuff, but it could be young as five to six months old and so but I need to check with that as I'm not speaking.
Johnna Grimes :Yeah, because I'm not. Yeah, and I just I don't know the milestones since I didn't do family practice, but I know that some parents, like when they kids need tubes in their ears, which I know is different they'll notice that they're like saying things that aren't like correct, or they're babbling longer.
Dr. Jessica Hissam:I can testify to why that is. I can hit on that One of the things that people don't realize with hearing tubes and stuff is if a child has multiple ear infections, they're not getting quality auditory access. Okay, and I actually do see speech delay and children that have multiple hearing infections. But think about if your ears are multiple all the time it's a form of hearing loss, but people don't say it's a form of hearing loss.
Dr. Jessica Hissam:So that's something I like to really encourage my parents like think about through the lens of if they're not getting access to good auditory, then they're gonna have a hard time acquiring it or spoken language, if that's they're out.
Johnna Grimes :Yeah, that makes I mean, that makes total sense and I'm loving like I'm loving learning all of this. So, yes, please continue with your story. You went to Pennsylvania and they diagnosed you day one and Dr Don.
Dr. Jessica Hissam:Bull burps at my parents' house and gave the news like I'm good, break this gently as possible to you. But one of the reasons that all the work that you've been doing it's not been unsuccessful but it's been challenging is because your daughter's been misdynosed the whole time. That's so crazy. And that's when my parents realized that they I was actually severely, profoundly deaf, not moderate severe, and that's a big jump there.
Johnna Grimes :I was gonna say can you tell us briefly what are the levels?
Dr. Jessica Hissam:What levels are mild to profound?
Johnna Grimes :That makes sense. So what can those people typically hear?
Dr. Jessica Hissam:And you have to look at the banana. It's called a speech banana and that's why I would encourage people to look at it. There's something called the speech banana and it can show you the ranges of from low frequency to high frequency, of mild to profound.
Johnna Grimes :That makes sense.
Dr. Jessica Hissam:So it's mild, moderate, severe, profound, like kind of four long levels. But and it's tricky, I can't just give you like a general answer because everybody's audiograms. That's what the picture looks like and that's where the speech banana falls. It gives a better picture. We understand where the speech banana is, just where people are losing, Because some people have normal low frequency hearing loss, but moderate high frequency hearing loss, Like you, have different variables. That makes sense.
Johnna Grimes :I mean it makes sense because your eyes are the same, Like some people-.
Dr. Jessica Hissam:I'm just down the whole bottom. That makes sense. Low and high frequency both Like I have no hearing. Low and high frequencies in the severe profound range.
Johnna Grimes :Okay, yeah, okay. So then you were misdiagnosed. Your parents learned that and did they one. They give you an option.
Dr. Jessica Hissam:And that's when we found out the whole time that the state of Alabama did not tell us there was a Co-Point Center in Birmingham Alabama. Oh, wow, so it took two years Wow.
Dr. Jessica Hissam:And it took flying to Pennsylvania to find out our option in Alabama and that's where a lot of advocacy stuff was driven, not just the newborn hearing screening aspect piece, but my mom at her heart, you know she was like okay, like that really wasn't informed choice, in a sense like we're actively exploring stuff and working together. And now, in defense of both, that Co-Point Center had just opened in 1994. Okay, so it was very new, because in planting children, what Co-Point was a very new concept, it was considered experimental, which is why a lot of people were not anti-Co-Point technology but they were hesitant.
Dr. Jessica Hissam:Because, it was a new medical technology and there was no studies on the outcomes.
Johnna Grimes :Okay, and so I understand the risk. Yeah, and like most people aren't gonna say let's experiment on a child, you know like let's Exactly, and that's the risk that makes it so.
Dr. Jessica Hissam:Yeah, I understand part of the cultural divisiveness that makes sense was they were concerned about the severity of the consequences for children who were implanted and not given the appropriate support and everything which does happen. And that's where high quality audiologists who are pediatric and Co-Point audiology specialists come into play because you have to so there is obviously a difference. Yeah, there are performance related that also work with speech pathologists who understand the principles of auditory verbal therapy.
Johnna Grimes :Okay.
Dr. Jessica Hissam:And what I see happens a lot is parents are not educated on part of the decision of doing what it takes and how much therapy it takes to learn to listen to Co-Point technology and there's multiple systematic factors.
Johnna Grimes :I would say to that.
Dr. Jessica Hissam:But there's also a frustration to me with audiologists too, who are not willing to accept that Co-Points need to be performed program performance. We're seeing a huge shift of Co-Point mapping trying to be shift to look like hearing aid mapping and we don't hear the same as hearing aids. And it's really a question, because I had even had audiologists had told me at like professional conferences, like you just need to suck it up.
Johnna Grimes :Wow.
Dr. Jessica Hissam:So I'm like this is my hearing, this is my life, you know.
Johnna Grimes :And you can't tell me. Yeah, I was gonna say like hearing, to not hear or to not see is a huge safety problem for you. Yeah, so, and I, like I can't empathize, like I can't always get these is it sympathy or empathy?
Johnna Grimes :Anyways, well, I can't because I don't understand what it's like to not hear, so like I can. But I can sympathize with you and say that is so awful and so terrible and wild, but like to walk in your shoes. Not even an audiologist can say I know what it's like to not hear.
Dr. Jessica Hissam:So that's Unless, there are deaf audiologists that have that too, and that's fine, you know. But it's just that is so crazy and, like people, have the choice to hear and you can still be safe in a lot of ways, because there are both my friends who are deaf. That don't work here. In technologies, they rely on vision or other means. You know, and-.
Johnna Grimes :Yeah, I'm just saying like we have to be careful. Yeah, it's a safety, like if someone's behind you. I mean I know you could probably feel and see, and things like that.
Dr. Jessica Hissam:I would say, with the way I hear a cochlear implants, I do hear from behind me some, but it's more of a big parental vision, feel it makes sense Like I have a little bit behind, but not directly behind. So that's things I just have to be aware of and stuff.
Johnna Grimes :But that's interesting.
Dr. Jessica Hissam:With families when they're making the decision about home-hunt technology. There's a lot of factors that go into that, and one of the factors being is where a co-point center is, because in Huntsville, alabama, at the time, they didn't have a co-point center or an audiologist or speech pathologist who understood that. So me and my mom were driving to Birmingham three to four days a week Wow In the very beginning of our journey, just to get the services that we needed. And then my brother and sister are deaf too. Really, yes, I didn't so is it-.
Dr. Jessica Hissam:It's parents recessive yeah. Okay, I was gonna say so, like this is obviously a genetic thing, yeah it is, but the chances of all three children being deaf is very slim, I was gonna say very rare, and we just said it was just God's will for us and it just led to a lot of our journey and the people we've made and connections. We get things-. Are you the oldest?
Johnna Grimes :Yes, I am Okay so then she already knew I have old shells and drums. I was gonna say then your mom kind of already knew kind of with you what to do Basically, and it was hard every time.
Dr. Jessica Hissam:Of course, as a parent, you know, not in a sense a perfect, but she just knew how hard the journey was for each of us, and so it's rewarding, but it takes a lot of hard work. So you got your cochlear implant my first one when I was two and a half years old, and then I got my second one when I was 10. And that's a different story itself.
Johnna Grimes :I was gonna say what goes into like implanting a cochlear implant, like, is it true, like you? Like implanting electrodes into the brain? No, and that's the biggest myth.
Dr. Jessica Hissam:There's a lot of people think it's brain surgery. It's not, because it does anchor a little bit into the auditory nerve. But you're not brain stem like you bypass the brain stem. But that's where part of Co-Point Cancel is making sure that you do have active auditory nerve, it's functional and you also have to have a cochlea. So the cochlea was just like the little snail as well. It has to be structurally stable enough and some people have misformed cochleas enough that a cochlear, the electrode, can't go through the cochlea to get to the auditory nerve.
Dr. Jessica Hissam:That makes sense there's a lot of reasons for Co-Point Cancel, if why somebody does it.
Johnna Grimes :So there's yeah, there's definitely, like you said, layers of deafness where? So there are some people that are born deaf or maybe acquired deafness that cannot have a cochlear implant, and they deserve to have all the opportunities that people with Co-Points do too.
Dr. Jessica Hissam:That makes sense and their own language and everything, and that's something I stand on.
Johnna Grimes :Yeah, and is that where sign language comes in for them? Because there's, or is there, other technology that would work for them?
Dr. Jessica Hissam:It depends, that makes sense. But, if I'm looking at it from a lens of language acquisition and acquiring both, or language acquisition, language nutrition, then yeah, their language this could be a visual language and there may be some technology supports Like I've seen people use, like the talk oh yeah. Table things like. There could be a range of things, but it's typically be a visual or a signed language, whereas ASL or C or TC there's like a different range.
Johnna Grimes :Yeah, now, do you remember?
Dr. Jessica Hissam:And today we see people know quicker now. Does that make?
Johnna Grimes :sense. Yes, then they're noticing. Yeah, now do you remember like which? I know you had your cochlear implant very young, but do you remember like hearing for the first time? No, I do not.
Dr. Jessica Hissam:Okay With the first one. With the second one, yeah, because when my second one, I had a sore ball hit the side of my head when I was around 10 years old. Oh, no.
Dr. Jessica Hissam:I broke my internal device and we didn't realize it, and that's the story I've shared on my Instagram and TikTok, which I need to finish, but you get the gist of it, of how I remember to the day, of how it sounded when it was failing, like I can remember it very well. And then I got my left ear, which I was one of the first file recipients in all of Alabama.
Johnna Grimes :Oh, wow.
Dr. Jessica Hissam:Like one of the first, of the first, for both children and adults. So, very experienced until still again. But I made the choice myself because I asked my parents when I knew my right ear was failing. I was like, okay, I have to do surgery on a side. Can I just get the side done? So I had asked my parents. I'm like everybody has two years to hear why can I not? And that was legitimately why I wanted to was cause.
Dr. Jessica Hissam:I wanted to see if I could hear better and to me I was like everybody has two years to hear, so why can I not to? So my parents were very supportive of that and they worked and ended up being a battle of insurance, unfortunately, but they supported my decision that. So I can testify to how it sounded with activation on my left ear, because but the thing that people don't realize is and that's where I feel like I have a unique experience, because I was implanted young and learn how to hear with my right ear the way I hear on my right side is very different from my left side.
Johnna Grimes :Really.
Dr. Jessica Hissam:Yes, my left ear is really my supporting ear. If I was to listen on this alone, my voice would change a little bit and I have a really hard time actually detecting speech.
Johnna Grimes :And when you say this, like I act, like I'm shocked, but like I mean it's no different than your eyes, Like. I have a friend that has like, a like she's basically blind in one eye and like can see out of the other eye and her prescription so different.
Dr. Jessica Hissam:There's some similarities with that, but I would say like the difference is with vision and depends on the type of vision loss as well. So I think, like I'm trying to think of a good comparison, think of it like muscles, let's do it that way. So it's like well, I have a friend who has a traumatic brain injury and they have lost use of both arms. Let's put it that way, right? So if you look at their muscle testing and different stuff as well, you can train over time to pay all the type of brain injury that makes sense.
Dr. Jessica Hissam:To regain strength, and they may regain full strength with their one side. But if you don't train the other side for a while and they try to train again, it's never gonna look the same that makes some of the work, and that's part of the reason.
Johnna Grimes :That's a good analogy, yeah and I get that.
Dr. Jessica Hissam:And that's where, with the deaf community, sometimes we get frustrated getting paired to vision. So that's not a bad thing, but it makes sense because there's census.
Johnna Grimes :Right.
Dr. Jessica Hissam:So that's where the conception is. People don't realize that the way you hear and the way your maps fire in the neuroscience level is it has its own mapping.
Johnna Grimes :That makes sense, yeah definitely makes sense, just like if you had your own maps. No, I'm complete. No, thank you, cause that makes total sense. It's confusing.
Dr. Jessica Hissam:And then there's not good analogy. So, but being a physical therapist is like I used to. I'm like, okay, that makes more sense to me because it's a reason.
Johnna Grimes :Well, being a health provider, I'm like, yeah. And when you say that? Because even if you like, let's say, casted your right arm, it's atrophied compared to your left one, exactly Because it goes back to neuroplasticity principles.
Dr. Jessica Hissam:If you don't use it, you lose it Right, which is why there's such a hot debate in the deaf community in general. If a child should even be implanted young because they can make the choice, I say on the premise it's a family's choice. A lot of these families, when they're making the choice to do this, it's usually informed Now on their families, who treat co-point technology as we slap it on and it makes our life easier Absolutely, and those are the families that did not receive good education.
Dr. Jessica Hissam:And I play the professionals for that often to be honest because there are professionals who do treat co-point technology as a cure and that is what creates a lot of the device-ness in the deaf community and that's wrong. Right Because it's not here, because, if I take this off, right now we be communicating differently, like we have to find other means to communicate, like I'm still deaf. Right, I didn't cure my deafness. It's just an opportunity for me. Okay, it's just a different way of having opportunity for me in my life.
Johnna Grimes :that makes sense Now do you wear 24, seven all day, every day?
Dr. Jessica Hissam:No, I take them off at night to sleep, which is glorious, but Because?
Johnna Grimes :you're like, I can be anywhere New York city and I don't have to worry about y'all Exactly, but.
Dr. Jessica Hissam:But I wear them to communicate and stuff, so like, if I have to have hearing conversations and conversations where I'm speaking and listening, then yeah, I'll be worrying for that.
Johnna Grimes :Now are you in a relationship? Yeah, I'm married. I was gonna say that would be also time where, if y'all are arguing, it's like take it off, you ain't listened. Yeah, I'd be like I can't hear you, sorry, yeah. I may have done that before where we're gonna argument and that's a joke. That's a joke. I'm just saying like it's funny to think about.
Dr. Jessica Hissam:I just looked at him and I was just like but he's like, you can breathe my lips, which I've really really well, and I'm like oh, it's speaking of my ears to no see.
Johnna Grimes :Oh, so, speaking of lip rating, yeah, covid wearing masks.
Dr. Jessica Hissam:That was brutal.
Johnna Grimes :Yeah, because, like you, obviously have your cochlear implant so you can listen. Now it depends on listening fast, my mode of communication, and that's the way but then some people who don't have it can either like, if they did which I know when I worked in the ER during COVID a lot of our geriatric population who did have hearing loss, who don't like to wear their hearing aids dependent on lip rating.
Dr. Jessica Hissam:And I still depend on lippery. It just makes the listening fatigue less. Works me, does that make?
Johnna Grimes :sense, because I'm using both Versus.
Dr. Jessica Hissam:if I'm just hardcore listening, I have a lot more listening fatigue because I don't have to work hard. So lip reading is for me and it's also known as speech reading. They're interchangeable, but think about people. Forget that 94% of your body language, it's language that makes sense.
Johnna Grimes :It's your body language, so that's all that. It's not verbal, so it's also it's body language me like what you do.
Dr. Jessica Hissam:So that's where speech reading helps me a lot. But with COVID you have to mask on and stuff and you didn't have your lips or like I'm not able to see, like how your cheeks move, how your jaw line moves, and people don't realize. When you pronounce certain words, you have certain muscular patterns.
Johnna Grimes :Okay, I didn't even think about that, like I didn't notice that, and that's what speech reading is.
Dr. Jessica Hissam:So people are always like what is speech reading really? It's not just reading lips, but people don't realize. Like when I'm lip reading, I'm actually watching your whole face and I'm figuring out and pointing the dots in my brain. This is how you pronounce a sound. So therefore, this is the word.
Johnna Grimes :Wow, and you have to do that very quickly. It's just natural, yeah.
Dr. Jessica Hissam:And I did, and that's where speech therapy helps me. Then some parts of speech theory, auditory verbal therapy. That's probably why I develop lip reading over time with a little bit of that as well.
Johnna Grimes :And I noticed that you posted something on your Instagram about the masks, like going behind your ears and your cochlear implant.
Dr. Jessica Hissam:I had a lot of breakdown, unfortunately my left ear. I had to take a break from that. But we've been working hard with my audiologist and she's exceptional. I've been with her for 25 years, which is amazing, but she's worked with me to help me get my left ear to work better for me functionally, like in terms of performance and stuff. But I did have to take a break because of mask wearing. I was getting like, so the new scars sit right behind your ear.
Dr. Jessica Hissam:Like if you look like we're to fold ear over, it's like literally right behind the ear. On my ear I have the old scar which starts from like around the jaw and goes into the temporal. It's like a head muscle and comes here and they don't do it anymore, but because it's more invasive. So they figure out how to do less invasive now.
Dr. Jessica Hissam:Anyways, but I'm just sensitive there. So with the mask it was just pulling me a lot Gotcha and I did have clear masks for patients who were willing to wear them, but it was like more of a shield. It really closed off the answer. That made people nervous, which I understand.
Johnna Grimes :And.
Dr. Jessica Hissam:I'm providing healthcare to them. Like they have the right, as a patient, to decline it, it makes sense. So, and I respect that. We tried it some and but, man, that cartilage hurt because it was lawyer's shield, like pushing your nose down.
Johnna Grimes :I was like this is not a good look. So I know we got off topic there, but going back to when you had your second cochlear implant, you said you learned, like you heard completely differently. How much work was that for you as a child, like all ages of life, like having to go to speech therapy and learn, it was a lifestyle. It was a lifestyle.
Dr. Jessica Hissam:So I did a presentation recently for a school district and I would have to go back and calculate the hours. But just to give you a snapshot from ages, we'll say zero as one, infinite zero to four. I was in speech therapy three to four days a week down Birmingham Alabama, especially auditory verbal therapy, on top of speech therapy at home, which is so when I say speech therapy at home, that was the stuff my mom was doing, was it was all play that makes sense, but she was basically immersing what we had learned therapy into home.
Dr. Jessica Hissam:And then, by the time kindergarten hit, I was still being pulled out for speech therapy two, three times a week on top of school on top of stuff at home and then by I think let me think about this by second grade. We'll say second grade it was more like one time a week and because I hit all my milestones by a point and when, and people don't realize that because I was late identified and late intervened, even though my parents were doing anything I could.
Dr. Jessica Hissam:when I hit kindergarten I only had vocabulary total of 5,000 words, which is really low, I want to say, and people can correct me, but I'm pretty sure that the average vocabulary of a kindergarten is close to 25,000.
Johnna Grimes :Oh, wow, it's something like that, it's a lot and you say you were identified late, but you were identified at one and a half, so I was identified with hearing loss, about five months old, but remember I was misdynosed.
Dr. Jessica Hissam:So, that's why I say late identified, because we didn't have a true dynastial. I was close to one to one and a half and that's when we started the co-point can see process at the same time. And it took a whole year because I was not deaf enough for insurance, because the FDA at the time only had improved pro-plant plantation for children at only profoundly deaf. But I was severe, profound, so I was on the bubble. So that's why it took a whole year to get my surgery scheduled and be approved to get a co-point plant at that point.
Johnna Grimes :Yeah, and so that's where I kind of wanted to talk. So if it was picture perfect world, how would it happen now for a child to be identified, and when should they, or would you recommend?
Dr. Jessica Hissam:that they start. So there are recommendations right now. Currently, the state's is trying to meet though 136. Which means that at one month old, you were a dynastial hearing loss. At three months old, you are seeing the early intervention and you have a plan established and you have received your implication by that point. Actually, if you are choosing amplification and by six months, you're fully immersed into the early intervention system. Okay, that is from the Joint Commission on Infinite Hearing. Okay, and the new guidelines which were passed in 2020 is now one, two, three. So they're expecting that every state should. When a child realize they have hearing loss, they're diagnosed by month one, amplified by month two and early of inches by three. Oh, wow. And right now, what we're pretty much seeing is a lot of people are falling through the cracks and some people say it's lack of family followup, and there's absolutely some of that, but some live it is there's not enough people to provide these resources and there's a lack. There's lack of resources overall too.
Johnna Grimes :Would you say also like, cause I know I work in healthcare and I think insurance is the bane of existence. I think we've let it get too far and too wide about getting things approved Like should someone be approved before they hit that severe level?
Dr. Jessica Hissam:So well, I understand what you mean by the word severe level. So with progressive hearing loss, usually there's RA discussions with insurance that they're looking at. Covid can't see anyways. But part of COVID can't see is you have to have hearing aids and approve. The hearing aids don't work.
Johnna Grimes :Kind of like anything.
Dr. Jessica Hissam:That makes sense and that's where it's best.
Johnna Grimes :You have to try this first before you can have this. Exactly, exactly, and I get the why because, I get it, but it's also spending more money in the long run because hearing aids aren't cheap either.
Dr. Jessica Hissam:No, they're not and they've gone up strawmically and unfortunately. There were a couple of bills that had been tried to push through the federal government level to get more affordable coverage for hearing aids and cover plans, and they still want pass. I like to say follow the money on that.
Johnna Grimes :But yeah, it's crazy to me because I the only experience I have is like my geriatric population, who has already on Medicare and on a fixed income.
Dr. Jessica Hissam:They can't afford them, and when people realize that Alabama Medicaid actually does not cover for audiology at all after age 22.
Johnna Grimes :What Yep? So if I wanted to go like, let's say, something happened, I can't hear, and I wanted to go have an audiology.
Dr. Jessica Hissam:Audiology covers services and hearing aid coverage at all after age 22. On Alabama Medicaid. That is insane, Not Medicare Medicaid.
Johnna Grimes :Yeah, but that's still like.
Dr. Jessica Hissam:People are like wait, I'm like Medicaid, yeah, but it's so insane and there's a lot of limitations for audiology care on Alabama Medicaid as well. Wow, Yep, and are you?
Johnna Grimes :I know you do a lot of.
Dr. Jessica Hissam:And I stay at Alabama, but from a national standpoint across it's pretty bad. But and one of the things that people don't realize is on a federal level, audiologists are considered equivalent of a nurse tech. They don't have the practitioner label either, and that was one of the laws they were trying to pass this year.
Johnna Grimes :But I thought they were called doctors, what?
Dr. Jessica Hissam:That's why I'm working here, because I'm like yeah.
Johnna Grimes :Wow, okay, that is very interesting.
Dr. Jessica Hissam:Yeah, so there's just a lot of layers and I think that's one of the things I see when I work with policy making different stuff. There's so many layers. I understand. I literally think of the meme of the guy with, like the poster board with all the red lines and everything and pointing like it feels that way sometimes because there are a lot of layers to it and, I think, quotation marks to get things fixed where everybody wins, to make access when it makes sense, where everybody has equitable funding, equitable support for services and stuff for their language, communication and their choice of amplification. If that's their choice, that makes sense.
Johnna Grimes :Yeah.
Dr. Jessica Hissam:It's going to take a lot of changes, even on the federal level, and one of them is the audiologist provision as well, because right now I think there is a disregard of audiologists and I try not to feed it. I think I just challenge audiologists you guys can be better, I know this, but because there's such a low expectation, I think of certain things that most people think of audiology as oh, you just go get your hearing aids fit it and that's it. But nobody talks about how audiologists can help improve hearing performance, which, if you really get to know audiologists who care about wanting to improve hearing performance, it's so much fun to talk about that that makes sense.
Dr. Jessica Hissam:I've worked with two that they've truly they've blown my mind on how they'll sit there and educate their patients like hey, you could actually do this or this or this, and they give them options, where I have seen some that are just like okay, here's your hearing, bye and that's where I think that's where I tell that the audiology profession needs to start calling out and actually doing better. But I understand there's a lot of fear because within the whole deaf community there's, like I like to say, two spectrums there's a leachism and there's autism. So autism is what you hear a lot more, which is the belief that people who have hearing loss should automatically be amplified and cured of their hearing loss with hearing technology, and that's what's considered autism and there's a lot more layers to that. But I think there's been such a rise of people being called audits on certain things when there's actually not autism to me that people are afraid to speak up anymore.
Dr. Jessica Hissam:That makes sense, so there's all that and it's coming a lot from a leachism, which is the belief that all deaf people should not have hearing technology at all and that their native language is American Sign Language, which is fine for certain families and stuff. But you can't mandate your life respecting your choices on everybody else, right, and it comes from the hurt of a lot of people don't realize. So there's autism and there's auditory verbal therapy and people make the argument that oralism gave birth to the auditory verbal therapy, but people don't realize the idea of oralism, which is teaching a deaf person to speak. They were trying to teach deaf people to speak without any hearing implication, right, which doesn't work. Right, auditory verbal therapy is focused on auditory amplification and so there is a lot of argument and a lot of deficinism on the committee of the deafness of oralism, auditory verbal therapy and autism and leachism and geron.
Johnna Grimes :So yeah, is that where it comes? Like I know someone had asked a question about speaking about the. What's the word? How did I just lose it? Discrimination again in the inside, the deaf communication like, where there's like you, who have a cochlear implant, you don't sign as much.
Dr. Jessica Hissam:You said you do know it, but you don't sign as much, and then other people who are like absolutely not you should only sign so and then there's a mix of us in the middle who are bilingual because they want the option to be able to communicate with their child when their child can't hear. For us, for me and my family, we just all lip-release speech really well, so it just that's like our visual communication. That makes sense. But there's some children who can't lip-release speech-free and that's where having another language was, such as sign language.
Dr. Jessica Hissam:Biff, it's the family right that's totally cool, you know, yeah, and that's the issue with a lot policy. Policy is very much politics as well, so a lot of the middle is not being representative. Well, I feel like, and on social media there is a lot of loudness from a certain perspective, and a lot of that perspective often states and chooses to continue to view that you're not deaf enough because you aren't the same way they have experienced life. That makes sense, yes, and some a lot also comes from hurt too, because, like these adults who are in their 40s to 60s that were raised in oral schools where they were not allowed to sign, which is not right.
Johnna Grimes :That makes sense they weren't allowed to sign.
Dr. Jessica Hissam:Yes, like, and so the one of the things that people have to acknowledge to oralism history is that deaf people were told not to sign, and there was a bit of a thing for a while of auditory verbal therapy that people, professors, were telling parents like you can only pick one or the other wow evidence and it's because people didn't understand. We don't know what we know now right but there there's a lot hurt there yeah so deaf people were being told not to sign which, what is their language for them?
Dr. Jessica Hissam:and if parents have chosen here and sign language for the child, but then to make their child quotation marks successful with learning to speak mm-hmm they should never sign, so I get the hurt there right, that's why there's a lot of disavocateness in general, because it comes from a lot of hurt.
Dr. Jessica Hissam:That is valid and stuff, but I think one of the things that people don't realize is a lot of the hurt and stuff to me has continued to continued in a way that is hurting people like us as well. I mean children who were born deaf, who were cover plants and stuff, who are more oral, but we've never been against the duck me like we've always wanted to be a part of them, but because there was actually agenda and propaganda that was pushed around the time I was born, that cover plant technology strips you of your deaf identity.
Dr. Jessica Hissam:Therefore you cannot accept them to your dad you're still deaf at the end of the day, exactly, and so I think people just don't realize there's so many layers to that hurt as well, that people have realized that the hurt comes all around both sides, that makes sense.
Johnna Grimes :So there's a little bit, some maybe a little bit of jealousy there, and some it's hurt it's just that's the way they've known their life and stuff.
Dr. Jessica Hissam:Just as people cover plants have sometimes a hard time knowing that there's other ways of life to does that make sense.
Johnna Grimes :What when you were growing up? Did you experience any of that discrimination with having it? Yeah, how did you? What was the experience like for you when you experienced it?
Dr. Jessica Hissam:so for me it was a couple different instances. One of them I have positive deaf culture experience where I did have interpreter and my church and stuff who did teach a sign class and that's why I learned third, fourth grade and stuff. But I even remember with that experience and everything they were awesome, they were super sweet and they were very validating of my parents choice and everything for me because they appreciate the opportunities that I had because, I was mainstream and stuff and they didn't have that same opportunity and they appreciated I had those opportunities right
Dr. Jessica Hissam:but they were even the ones that worried my family, like now know that not all people are accepting like we are and like I had kind of known that in the back of my mind that makes sense. But I would say the most adverse one actually happened while I was in physical therapy school. I was testifying to our state Congress community on education about a bill that just was not pro family choice and it was a bill that actually would create a lot more barriers for children who family has chosen hearing technology with listening spoken language and even if they were bilingual, and the bill was very mandating ASL and people won't acknowledge that.
Dr. Jessica Hissam:But that's what the root of the bill was. It took away family choice and there's a lot more layers, that. But I was testifying and the interpreter stopped signing because he believed that I was faking my deafness and that I was a hearing person that my parents had chosen to implant just to show their agenda, so you were faking yeah, they stopped signing, and so my audiologist, who's a fluent signer as well, stood up and started signing the rest of the way.
Dr. Jessica Hissam:I was saying so that way and he was, and that was wrong to me because that was a hearing interpreter well, number one.
Johnna Grimes :That wasn't to you. That was actually detrimental to the people who could not hear you well and all around because he was also.
Dr. Jessica Hissam:They were signed and they're like she can't be deaf, like there's no way she's deaf and speaks this well on everything, like they didn't even know that Copent Technology and you're better than me, because I would have taken my cochlear implant off right at that time and been like say something because you know you, you're way better than me.
Johnna Grimes :But I guess if you're in front of Congress maybe you shouldn't show your ass if you're trying to get bills but here I'm. I'm all about, like social warrior justice and I'm all about showing my ass to across the whole spectrum, like we got show up all together and that was what's most frustrating to me the whole situation is they really didn't know because systems in place
Johnna Grimes :were hiding the time to show Congress like, look, there's, this is the spectrum and that's why I showed up right like I. You could be like people could be like me, like they can hear and they can speak as well as I do, because my mom advocated for me or we just found their sources, but we had to fight tooth nail and that was the problem.
Dr. Jessica Hissam:The bill the bill was actually not gonna be equitable funding at all for all those spectrum and right choices. That makes sense.
Dr. Jessica Hissam:So that was more of the reason we testify and did support the bill because it really did create equitable funding right and a lot of people don't realize it and you can take the time to read and you can figure out how much funding is given to certain choices and people believe that and I feel like that's a misconception and actually change the state-to-state. But in our state our funding is about 1% for corporate technology and listening to spoken language, choices for family, for children, appearing loss.
Johnna Grimes :So I like to say follow the money right, that makes sense, so it was a bus straight, and that's today and how so? Like even today. Like so, if they get denied, if someone gets denied a cochlear implant, do they have to pay for it 100% out of pocket, if they choose to still the one person?
Dr. Jessica Hissam:I'm talking about funding yes from the state government yeah so, if you know. But related to insurance, yeah, it depends on your insurance carrier, but I do see increased denials just for, or very limited coverage it's probably the better word limited coverage for copent surgery and they'll cover for your first implant.
Dr. Jessica Hissam:But if you need upgrade and that's one of the things that I work on an advocacy standpoint is being someone who was born deaf and plant copent's young, I have to cover the costs of that for the rest of my life and that is something that people will try to use as a reason why people should never be implanted. But that's still wrong because it's not.
Dr. Jessica Hissam:It's not a good point you know right like, if we have a choice, we deserve to have be able to have coverage for the choices that we have to and continue this, you know.
Johnna Grimes :I got the service.
Dr. Jessica Hissam:Yeah, yeah, I guess you have deserved the right to have equity funding and coverage for whatever you need to communicate and right do your work and everything it's in since accommodations, but it's also healthcare as well and I mean that should just be a mandated law anyways in general, like if this is your disability, it's a disability.
Johnna Grimes :There should be laws to protect.
Dr. Jessica Hissam:Like you said, there's laws in place but they don't really man for sent. And there's, that's. That is a whole another topic of disability history as well, and this is made injustice that we see especially in disabilities as well, because ableism right.
Johnna Grimes :So now I know we talked a little bit about your childhood, going into your physical therapy program and you graduated that. How long were you a physical therapist before before you realized, like you know, what my true passion and my true calling is to do this advocacy work so I was already advocating with social media and stuff before.
Dr. Jessica Hissam:I went to PT school. I just always had loved being the idea of healthcare, of working people and serving other people, because for me it's about meeting people where they're at and that translates a lot to advocacy. And that's where I do want to be clear is there's this perspective of me as an advocate, because I represent a part of our spectrum. People automatically think that I'm anti. Everything else right and it gets really frustrating. But the thing is I'm not here to say what is better, but we need to meet people where they're at and we need to show up for what they need at where they're at yes, that makes sense and I'm glad you said that.
Johnna Grimes :Physical therapy as well I was. I'm glad you said that because I have a hard time, even in my life, when I try to advocate for others, like I think sometimes I push it past of meeting them where they're at and I'm like you should be here. You should be here and try to get them to see my side.
Dr. Jessica Hissam:So I actually needed to hear that so thank you for, yeah, I get that. It's not easy because I have healthcare providing, but we live in, and so part of disability history, if you want to know, is the medical model, and that's where the medical mall treats everything as disease and cure. Right, so see me. So when we look at the medical model, everything word that is up to blame a lot of the ableism that we see in the deaf community right not deaf that a lot of ableism within the disability community overall right so but to answer your question related to what got me to physical therapy first place, I've always have loved moving my body.
Dr. Jessica Hissam:I was a Kappah soccer player, okay, so I always loved moving my body and everything and so I wanted to use my passion for moving everything and I loved anatomy, I love watching how people move. Like it's just, it's very natural for me. And so I went to college and stuff and I just start pre-farm because I was debating on that, I liked chemistry, realized that was not for me, it was not for me, and so I started my path for physical therapy and stuff and I knew physical therapy, like I could work people who have amputees, because I always thought that was fascinating, like prosthetics and stuff, and it's kind of meeting people where they're at right. They've lost their limb now they're navigating having life of a different disability as well, and that's why I appreciate it.
Dr. Jessica Hissam:I had thought about primary doing neuroscience, pt. So stroke, remembering, injury, yeah, all that. That was always fascinating to me, because not of the science behind it, but it's a way to me, it was a form of ministry for me, like I get to be people, meet people were at and encourage them to go somewhere, but also like it's a small baby step process. I think that's one things. In medical mall we go from a to z yeah, we think about a to z between.
Dr. Jessica Hissam:That makes sense, right? So that's where I really do appreciate the therapy profession in general because we do a lot better, and that's where our like professors work great with medical professors, writers, because we can help you guys figure out where that steps fall in between to get somewhere yeah, I agree, yeah, yeah, because even when I've worked with other people, they'll be like, hey, like they might say, hey, they're not understanding you, like you might need to explain it in a different way, or maybe you should try this.
Dr. Jessica Hissam:And where they're at right, but it doesn't mean that you're saying the part low right and there's a balance so with advocacy and stuff. I mean, I've been deaf my whole life. I had to work through a while that I wasn't deaf enough. But I'm also not hearing you, though most of my friends are hearing. So I live between two worlds for a while. So there was a lot of that. And when I got to undergrad I had other friends with disabilities and I started to get more comfortable my disability identity. But it was because I was falling out of my house, not necessarily out the safety of my parents house, but right, I'm like in the real world. I'm like, okay, there's more to me. Like you know, I am deaf and because this is how I live my life.
Dr. Jessica Hissam:That makes sense yeah, and so, and because I had to wrestle a lot with internal autism and certain things, but also just a lot that I felt the hurt of. I was never deaf enough for my deaf community. So I'm like, okay, then, where does that, where's that put me at? Because when I'm teaching my friends and stuff, my friends ask me like not what you need, but they want to genuinely learn about my life and stuff and experiences, part friendship, but recognize like, hey, when we are roommates, this is what looks a little different than your hearing roommate, right, you know so and advocating for myself and stuff, advocacy just paying a lot more natural, because advocacy really is just storytelling, it's a way of educating and it's also storytelling as well.
Dr. Jessica Hissam:And I got really natural to me and at the time with social media I was more of a fitness content creator actually and hunts for different stuff. By time I was in PT school but I started sharing my deaf journey and aspects of that. So during PT school I was already doing some advocacy work. I just wasn't doing it as much on social media, okay, and that's when I had testified against the bill and stuff. So I was already doing advocacy stuff in the background sharing my story, but then I would say the tipping edge was that event?
Dr. Jessica Hissam:okay, when I'm learning testifying the interpreter, stop sign because he had once he had believed that was deaf and that was faking it. And I'm like, okay, this is enough, because I had a couple other eight experiences up to that point, sharing different stuff. They're like but you're not really deaf, like you're hearing, you work, help on technology, so you're not really deaf. Yeah, I'm like okay, and sometimes it feels like not in a way like I have to win, but like there's no win for us there's really not a lot of safe spaces for sometimes, right.
Dr. Jessica Hissam:So I was looking, I'm like, okay, where can the safe space create be created, but if nobody talks about how to create that safe space for all of us, it's not gonna get there, right? So PT school went through, which I have absolutely no regrets about that. I loved every minute of it. I thrived in grad school, which people say grass, was the worst of their life.
Johnna Grimes :But I really got school. I thrived in grad school.
Dr. Jessica Hissam:I just you know. I loved it and I'm absolutely thankful for all the skills that learn as physical therapists and public health both and so I finished PT school and I started working three years ago COVID hit or I guess I've been working for three years because of clinical and everything, but I would say two and half a year officially yeah yeah, but but then COVID hit. You know, for all of us.
Dr. Jessica Hissam:I had just freshly graduated out of PT school, I took a vantage because patient Kelly slow had dropped a little bit and took like almost every class to get my public health specialty wow and so because that was always fascinating to me just how the whole body works, because with public health it's a very much of a full-body approach to me compared to other aspects of physical therapy.
Dr. Jessica Hissam:I like that full-body approach. I'm a bit of a. I'm really into functional medicine as well because all immune issues my man yeah, my mom has on me issues in my family. It's like genetic, so we've always been pro functional medicine as well anyway. So public health to me was bridging PT and functional medicine as well okay that's where I got started. But you know, in part of advocating not just for my deafness, I was also advocating for my patients yeah, I got really comfortable advocating to doctors.
Dr. Jessica Hissam:I got really comfortable advocating to even insurance sometimes good help, a couple is necessary.
Dr. Jessica Hissam:so it was more natural to me and then. But I continued to see this trend. There really was a safe space for all people and that have our deaf and have different choices. That makes sense, right. There really was that safe space for all of us. And COVID hit and I lost all my visual cues with the mask and stuff and like I was exhausted and I was finishing up my public health stuff so I was still working as ortho only, so I was seeing two patients every hour.
Johnna Grimes :Wow Okay.
Dr. Jessica Hissam:With mask on and I would go to work and I would come home have enough energy just to cook and stuff and my husband, like we, trade towards the stuff. We have a good balance. But Chris was like you. You literally came home, had to take your implants off because you you were drained from listening.
Johnna Grimes :And I was like that's something that we haven't taught. We've kind of briefly talked about it. How you said, even though you can hear, you still have to read lips.
Dr. Jessica Hissam:You have to because I had asked you when I needed to understand your voice and you don't have a very good RTL voice. I guess I like the way I feel like if you have a deep voice or really soft voice or something that I'm going to be, really rely on your visual cues. That makes sense.
Johnna Grimes :And so, like I've, and then I asked you the question like, do you listen to podcasts? Do you do? And you were like, no, actually get listening fatigue. And I was like, oh, I see, I personally didn't know that was a thing that you would get listening fatigue if you're quote unquote hearing with a cochlear implant.
Dr. Jessica Hissam:So so listening fatigue applies to the concept across the whole spectrum of deaf community, people who have hearing or choose to use hearing technologies. So think of it this way. This is the analogy I gave on another podcast and it's one that resonates well. We all have iPhone batteries, right? Okay, when sub eye is wearing hearing technologies, that's an app running in the background the whole time.
Johnna Grimes :Okay.
Dr. Jessica Hissam:But instead maybe a few apps running the background, like for you, because we have all our mental processes going like we're listening, we're also comprehending, we're in taking information, we're analyzing information and stuff. Right, but we're doing all of that. But I'm doing all of that while also making sure I'm processing correctly. Yes, what did you just say? Okay, and also I actually hear right, okay, on top of all that. So for me, I'm running with multiple apps in the background. So for me and we use COVID as an example we start fresh morning, our iPhones are all 100% and by lunchtime you guys may be at 50, I'm at 25%, because I've also lost access to certain apps. Apps are not working because I have certain visuals and different stuff.
Johnna Grimes :So I'm relying more on listening energy to make sure I comprehend information and that's where I get confused in my head, like which I guess I wouldn't have known if I didn't have this podcast. When there is discrimination within the deaf community just because you are hearing, you still have to go through because we have access to hearing.
Dr. Jessica Hissam:But we worked really hard to hear as well. We do.
Johnna Grimes :That makes sense yeah, but you still worked hard and you still have work hard every single day.
Dr. Jessica Hissam:Yeah.
Johnna Grimes :So to me that is actually admirable.
Dr. Jessica Hissam:It can be, but it's just our life.
Johnna Grimes :Yeah, it makes sense.
Dr. Jessica Hissam:It's just how we live. It's just our life that makes sense. So, because that's one of the things I work with is a lot of disability. People myself we understand, because our lives are different. People view it as admirable and stuff, so that's what we talk about, like disability and discrimination, and it does come from good intent, but people don't realize that really it's just the way we live.
Johnna Grimes :So part of just educating.
Dr. Jessica Hissam:that makes sense. Yeah, and that's it. It's a weird back yet.
Johnna Grimes :I was saying like within that community, and the discrimination to me, like I guess I don't understand the discrimination when you still are having to do all the things that you are doing to get where you are, yeah, and then, just as my friends who native language or their primary language is signed American sign language, they are busting your butts all day long trying to even find those resources and stuff to have people communicate with them because, the rest of the world.
Dr. Jessica Hissam:We don't communicate with sign languages.
Johnna Grimes :Well, when I worked in the ER, I would have some deaf patients come in and of course we don't have any on site translate. We only had Spanish. I'll usually be RS, I'm guessing, but it's not reliable and there's a lot of freeze all the time, but it's frustrating for them because they don't have effective language access. Right.
Dr. Jessica Hissam:That makes sense. Effective communication access. Sorry, that's the word effective communication access, and that's very yeah.
Johnna Grimes :Right. So like that's the only kind of example I had, I would feel very like like I couldn't do anything for my patient because I couldn't communicate with them.
Dr. Jessica Hissam:Yeah, and like there's always communicate, but that's where you just have to work with and ask the deaf person, sometimes people willing to write, and sometimes I think what happens in situations especially ER is a high stress situation. So sometimes, when I feel like we're in the fight and flight mode, we just don't think as clearly because with communicating, it does require taking a step back to figure out how to communicate with someone.
Johnna Grimes :Right, I mean so. I mean, like, if you're coming in in a trauma, how do you get that done quickly? Yeah, if you can't communicate and like even even, not even just deaf patients, like even patients of other languages where we couldn't get the translator.
Dr. Jessica Hissam:They are fast enough. Exactly, it's a very scary situation and that's why I would love to see more healthcare providers of all languages, and I have a couple of friends, one especially who has code points, but she's also fluent ASL and she's a nurse in Birmingham, I know that's awesome. Yeah, I mean, but it's good, because we need professionals who are bilingual in different languages too.
Johnna Grimes :I agree and I wish it was taught in like med school, nursing school. Like I wish that was part of the program.
Dr. Jessica Hissam:Like I wish that there was basic ASL, like that is something that we have pushed for and that there should be basic ASL and medical terms, just for communication purposes, it would be one thousand percent.
Dr. Jessica Hissam:Yeah, so, going back to your advocacy yeah, so then it was PT, it was natural advocacy and stuff by starting sharing my story more and started realizing because there was a lot of policy stuff going on during COVID as well that really, or prior to COVID, that wasn't benefiting. I'm trying to think there was a lot of policy at the time that was it truly representing the whole spectrum of the deaf community? Okay, and calling for equitable funding and equitable representation across that makes sense, right, you know. So that was really concerning to me and I was seeing also in certain states where this had been passed, there were already families being denied of the choice they made previously Okay, and no longer had access to their services and supports as well, or they were having to fight a lot more for it Okay, because people weren't trying to view deafness as well through the lens of one perspective.
Dr. Jessica Hissam:That makes sense so that's why I started sharing my story, not as, in a way, like you're wrong, but there's more to us than just one perspective. But we have to start all working together.
Dr. Jessica Hissam:Right and that's where a lot of my deaf advocacy started coming out of that, and so I just started sharing my story. Just you know, like, hey, this is just me. This is my experience. A co-parent per user. Okay, Technology is not perfect, but this is how I live day to day. Take it. But take what I say with a grain of salt.
Johnna Grimes :That makes sense, and that's really how I started sharing.
Dr. Jessica Hissam:Because families have the right to inform choice. They just have the right to know the whole spectrum of choices, not you're not saying my way is the right way.
Johnna Grimes :You're just saying this is my experience and learn about all the experiences and then choose for yourself what is the best experience, and that's what I stand on and I do agree with the deaf community, deaf culture.
Dr. Jessica Hissam:There are professionals who are it's their way or the highway, and that could be true.
Johnna Grimes :It was a lot of hurt and I've seen a lot of doctors like that and we see that in.
Dr. Jessica Hissam:You know medical field as well, so that's where a lot of this stems from. But there is Paul's and Law's try and be made based on one perspective, and it is politics in a way.
Dr. Jessica Hissam:So, that's where I started, but really is story sharing, you know so it became more and then, during COVID, I lost access to my master, was exhausted and everything and um, and that's why I started and that's really you know me.
Dr. Jessica Hissam:My husband had married for gosh, only two years at that point and I realized that it is my decision, to how much I want to call myself deaf. Yeah, because I was coming home like I am living everyday life as a deaf person, as a deaf physical therapist, and people were trying to tell me for a long time I couldn't label myself as that because I wasn't culturally deaf enough. But I'm also like that. These are the same people who do not want to acknowledge that I am a part of this community and that's the way the straw that broke my back. Yeah, that, like it was enough, was enough and I'm going to start sharing my story because it's not just one perspective. But you know, I've lived my life like I have face discrimination too. I face discrimination all around, and like I'm fine too for nail trying to get the supports I need everything.
Johnna Grimes :Not only for you, but for everybody.
Dr. Jessica Hissam:Keep fighting for you guys too.
Dr. Jessica Hissam:You know, but it takes two, not to tango, but you mean tango. You're supposed to work together when you tango. You know what I mean, but it does take two to tango.
Dr. Jessica Hissam:So there's more than just this, and so I took time and this is around the same time my mom had the vision for our nonprofit she's our founder and she started. She asked me to start thinking about it and like looking over and praying about it, like if I want to join her. So I was still working as a PT and I joined her just to help her out and get it going. But then we continued to see things when we started working more in special education, where families were being denied the services that they needed in school districts and my mom was doing a lot, that I was learning a lot from her and I realized that like it's been natural for me to advocate like this, you know, and I I'm so thankful for my mom and my dad too, but my mom especially, because I'm such a quotation marks successful advocate because of my mother, because she modeled for me of what advocacy looks like in the trenches.
Dr. Jessica Hissam:Yeah like how you can speak the truth in love but you stay in lane, or in the sense of you hold. You hold the ground.
Johnna Grimes :That makes sense.
Dr. Jessica Hissam:Yeah, but it was all that and I realized that there needed to be people like me sharing our stories to show that you're not alone either.
Johnna Grimes :That makes sense. Yes.
Dr. Jessica Hissam:So that's really at the vision of everything my mom had experienced as an advocate and just multiple stuff of Halsey and that's her story to share. But basically During COVID, I would like to say there was a couple of different things that were occurring that time. That was basically the straw that broke all our back.
Dr. Jessica Hissam:Yeah and led to the formation and creation of what's known as center for advancement, next end up because, in order to Promote policy and to protect deaf people across the whole spectrum, we're just next-gen deaf. Promoting the next generation of deaf people means that we also have to get together Like there is a seat at the table for all of us and because there's nothing about us Without us. All right and like the emphasis on the word, all that makes sense.
Johnna Grimes :No matter what you choose yeah, no matter what, and what I'm learning in this podcast is like obviously, there is so many different languages within the deaf community.
Dr. Jessica Hissam:There's just a lot layers and there's a lot of systematic issues, even on the state levels across the nation, to where a Certain state, you may have better resources for American Sign Language Compared to listening spoken language, and then other states you'd have a lack of American Sign Language resources. But there's a lot of resources for listening and spoken language, like it's all funding and stuff you know.
Johnna Grimes :So I get it so with your nonprofit, what are y'all only doing? Policies? Are you actually seeing patients? We?
Dr. Jessica Hissam:do a lot of things. So and that's, yeah, the question. So we did announce recently that my programs is next legacy audiology as a program and we will be seeing patients starting this summer.
Dr. Jessica Hissam:Oh yeah all things willing, but the beauty of that audiology clinic was open. Out of a couple issues that we're seeing, especially the last year nationally and internationally, is One co-point manufacturers are trying to shift programming into more like a hearing aid type of model, which is fine for some people, but they keep delivering, leaving out people my age, which we call lexico point users, because we were born deaf or we were implanted at young age and we've lived co-points our whole life and a lot of the data keeps looking at ages zero to five and they consider an adult co-point user to be eaten by over age 60, like the average age for adult co-point recipient is 60. But there's no right. They're not collecting data in the middle. They're kind of grouping us into adult, but we're a pediatric co-point users that grow into adults and the protocols don't match.
Johnna Grimes :Right, if you have it, you should continue it. Does that make you nervous that they won't? Yeah, okay, I was gonna say what are they taking away?
Dr. Jessica Hissam:I'm like you are changing my performance of my hearing right and so are you about to Take me to a point where I won't be able to hear my hearing technology so I'll be able to access my job and other stuff that I need for access. So that's where that piece and collecting data is what we're gonna do over time. It's just demonstrate like this is a population that you guys are deliberate ignoring, and we're saying it's on international scale. So I worked with some other people with that. So that's one aspect. And plus, co-point services are really not covered under insurance at all either.
Johnna Grimes :So basically between ages five and sixty. There is nothing. So what if I'm in a traumatic here, but they don't really collect data with us.
Dr. Jessica Hissam:That makes sense, they're just kind of pushing us into the adult category and they're focusing on what people around 50s 60s are saying focus groups about what they want for their hearing technologies. But these are the people who've had hearing most of their life and become late in depth, which is fine. That's just their life, you know. But they're hearing differently than we hear.
Johnna Grimes :But what if you have early like?
Dr. Jessica Hissam:I'm 30, I'll be 37 this year.
Johnna Grimes :And what if something happens and I was all of a sudden can't hear so? Then I don't have access to cochlear plant.
Dr. Jessica Hissam:You do, you have access, but I'm talking about is programming. So the way, Okay, okay okay, so the way you you have to be mapped a certain way to hear certain Okay, yeah, now I apologize for the confusion.
Johnna Grimes :No, that was me. I was just like but so even, but even though mapping is part of the cochlear plant technology, so that would make it that's still a software thing, or?
Dr. Jessica Hissam:try and make it like it easier for audiologists to program us, but they are not wanting to acknowledge or I have felt they are refusing to acknowledge the Sacrifice of who they're sacrificing. Yeah, which is people who've been raised and because there's a lot of layers, like I said. But with Co-Prim mapping there's a something called streamlined mapping. Okay, but my map is so individualized and based on performance that the software will lock you out of stream mapping.
Johnna Grimes :Really.
Dr. Jessica Hissam:Progles because I don't qualify for it. And I have a friend who had moved to a different state, who is like me, and the audiologist got flustered at her that she could not switch this person to streamline mapping because that's all she knew what to do. And that's where I go back to the audiology profession piece that we have to start figuring out a solution altogether, because Do you think it's the, the and some is manufacturer faults, factors are training audiologists, what to do.
Johnna Grimes :I was like is it also like schooling? Like I wasn't, I would say schooling, because I'm being worrying.
Dr. Jessica Hissam:To work with other plans is a specialty, Okay just like I went to PT school and then I worked on my specialty as public.
Johnna Grimes :Yeah, that makes sense, because I was like is it because they're not learning it in school? No, so they're afraid to learn something new.
Dr. Jessica Hissam:No but I would say I attribute to training, because Certain Co-Point manufacturers are really not. They're focusing on audiology from a geometric standpoint young, young children but they're not thinking about the life Spam does that make sense? Yeah, so they're looking at Korean technology. It's like it's not all bad, yeah, but the thing is they're reviewing technology stakeholder group, which is us.
Johnna Grimes :Because we have lived our whole life.
Dr. Jessica Hissam:People face multiple revisions and one of things that people don't realize Co-Point technology. Was it made in the mind when it first was created? Because it's an implantable device. They're looking at the lifespan, so I used to go live for 20 years, okay, and so now we're seeing a lot more revision surgeries my age group because Well, not only that.
Johnna Grimes :Like technology changes every day, they could come out with an implant tomorrow.
Dr. Jessica Hissam:That's this big and people realize that the internal processor has to be. Whatever they make externally has to accommodate the internal processor. But, like for some of my friends, they basically have is equivalent of an analog inside their head. Everything it's digital. Mm-hmm so they're having to have revision surgeries even to upgrade or they will lose hearing. Okay, so there's a lot of layers to this as well.
Johnna Grimes :So with next.
Dr. Jessica Hissam:Lexie I algae went to help support people because switching and activating someone from an analog processor to a digital is a Shock to your brain. You have to be very sensitive. You have to program based on performance. With that.
Dr. Jessica Hissam:Okay that's what happened to me at 10, because I was a very older internal device model and was Implanted to a new one because that was the choice that makes sense. Yeah, my audio. I'll just knew that. And when we had to individualize my map in such an extent, so it did not feel like a shock to my brain.
Dr. Jessica Hissam:Yeah, when it was activated, yeah, that's yeah, and that's where we have to have those customized tools and they say it still is customized. But it's getting to the point that you can't access or customize tools that we rely on performance.
Dr. Jessica Hissam:Yeah, that makes sense, yes, that makes a lot, because people are afraid to work with complex co-point patients, which is what us. It's what we are. We're complex because we've been living up our whole life but we have to advocate for that piece. That makes sense. Yeah, that's part of next legs. The audiology is objective and the other objective is pediatric hearing a fitting and then Because we have a huge wait list for people who need pediatric hearing aids and stuff, and children they grow fast so we can talk all about that. And then here in screenings there's a lot of children that are not having a second hearing screening because the wait lists are so long, so there's a lack of follow up. But that's like the primary purposes. We're just trying to help service, not service, but we're trying to help fill the gap that we're seeing basically in North Alabama.
Dr. Jessica Hissam:Yeah and nationally related to cover plants and providing Hearing services and quality hearing services, and on the ideological care to families who are next-gen deaf.
Johnna Grimes :So, starting that clinic, how many audiologists do you hope to have?
Dr. Jessica Hissam:Oh, we already have one, and it's our director of audiology and she's, her name's Dr Lisa Hall, and she's Finishing developing our entire program as well for us.
Johnna Grimes :But how can we, as the community, help y'all grow like, let's say, in five years from now, y'all have 50 audiologists in there and people I'm saying like people are flying from everywhere around the world to your clinic. I mean that would be the goal and the hopes and the dreams.
Dr. Jessica Hissam:Well, and we have a secret that we hope to reveal, where maybe people don't have to fly for us, but we have some things and the works that to make ourselves accessible.
Johnna Grimes :Can we donate to your nonprofit?
Dr. Jessica Hissam:Yes, you can donate to our nonprofit right now, but we don't have a nation leak up because we're waiting for our text to be, from IRS. That makes sense, yeah, but it just takes time with the government right now. But we're developing. We're treating it ourselves right now as Wait we can. We are acting right now like we know people need this stuff, so we're working right now.
Dr. Jessica Hissam:Okay, yeah because then the flip side, and that's where I would just say just watch our social stuff. If you want to support us financially, we absolutely love to have that support as well on the flip side.
Dr. Jessica Hissam:The other thing we do is advocacy work. So we do a lot of education with teaching parents about what their rights are. How does it look to have an IEP for a child who's deaf and hard of hearing, with hearing technologies that use listening as vocal language? How does it look to have an IEP or section five of four plan For a child who's bilingual? Like that's the things. That makes sense. Yes, you have to be very careful with the word except, but the goal of our advocacy program is to create a collaboration between Families and school districts. Often schools view a parent who knows their rights as a threat Because they're more difficult to work with, and that is False to me, because those parents are really difficult work, they're just, they just do understand the rights right. But like there can't be some common ground and I think that's it.
Johnna Grimes :What do you see like? Do you like so in our community? Are you going to the schools to teach them? Like how not?
Dr. Jessica Hissam:this time. But we teach parents of parents come to us Okay, by consulting services and stuff. Okay, where we'll walk through the IEP process and stuff. And usually, because we're usually working families who are in the trenches, so the school has denied them at their right. They're trying to avoid due process. So it's actually a great tool to use an Afghan outside. The parent has the right to bring anybody they want to the IEP meetings. Okay, and it's five or four means so some parents will bring an advocate and to try to help remedy the situation that makes sense so we're not attorneys, but we basically work on creating paperwork and different stuff.
Dr. Jessica Hissam:So that way, if it goes to due process, we recommend our families to attorneys that we have established relationships with to help navigate the situation. But we're basically like a Hail Mary innocence to try and remedy the situation. So my goal is collaboration and because we have to build capacity somewhere within the school systems to create resources and stuff, like I want to be able to work with school districts, not against them. Yeah, so that's also the other Part, I would say, of a lot of what we do are not that'd be really cool if the schools actually could bring y'all in and just I have like sure before, Honestly I have and we've created some good relationships recently out the fruit of all that.
Johnna Grimes :Then they could just reach out to you if they're, if they're like hey, I have this deaf student and I don't know what I'm doing, can you please just help me? And that's things that we do, yeah so that's part of the absentee program.
Dr. Jessica Hissam:So, and, but you can basically say our nonprofit at this point it's currently is the tube around size of share. We want to serve next-gen death through our clinical care and different stuff, that on through that, and then we also work with advocacy services as well and support like we're just here for all. That makes sense. Yeah, and through all that it does shape some of the public policy that we do. That makes sense.
Johnna Grimes :That makes a lot of.
Dr. Jessica Hissam:We have livid we see livid experiences. We're not collecting data, but we're able to carry from, like here's what's actually going on, yeah, and here's a solution, but here's what's going on, too, does it make sense it does, and I appreciate all of this information.
Johnna Grimes :Like you said, it's a lot of layers. You live like a cycle that makes sense You've lived it your whole life, so you can say it's easy for me to educate like, but even just so like, if someone is listening to this podcast and they're like I want more information. How do I learn to be a better advocate for the deaf community? Where would you tell them to go?
Dr. Jessica Hissam:Well, thanks, you can check out our website just to see what resources stuff we have. A couple things there. I wouldn't. The biggest Way to connect would be our socials. So you can look at my Instagram directly because I do a lot on Instagram and posting and stuff and my personal Instagram that's just dot h squared. And then our nonprofit Instagram, which is linked on my Instagram, is Can G deaf, which is CA in G D and then but word D starts is the word deaf. So that's how you can find us a little bit to learn more and because really the future I've seen educating is social media.
Dr. Jessica Hissam:It is something I'm working as executive director to really Get the word out there that makes sense. Yes, and, being a nonprofit, we believe in transparency too. We understand that nonprofits are under scrutiny and nonprofits don't use their funding well, but we want to demonstrate through our social stuff that we Acknowledge this and we want to be transparent.
Johnna Grimes :Yeah, yeah. No, I appreciate all of this information, like your story is. Just, I know you say like Admiral's, kind of like the not word to you I find you.
Dr. Jessica Hissam:I appreciate that because, like we can talk about as friends of friends, that's it I think I find you admirable just because of the work you are doing.
Johnna Grimes :Yeah, I don't find you admirable because you're deaf and perfect.
Dr. Jessica Hissam:I find the way to say that makes sense.
Johnna Grimes :Yeah, I find you admirable because the work that you're doing and the policies that you're putting in place, like that it's not even something that I would have even thought of Because I am hearing. So I find you at like you're so young and you're Speaking of Congress like I mean, that is admirable.
Dr. Jessica Hissam:This is the biggest thing I like to leave people with. One and four. People will have a disability in them in some time in their life. One and four, yeah, and out at that. One and the last I saw was one and nine will have hearing loss at some point in their life.
Dr. Jessica Hissam:Wow, and that's us alone and that's worldwide as well and it's predicted, I think, by 2015, that one and two people will have hearing loss, and I know we I know we hear it more like with hearing age and Geriatric populations because we all have grandparents that their hearing is decreased over the years and I shared a personal story with you before the podcast and I don't care, I'm a very open book my grandmother who was tragically passed away in a fire in her house.
Johnna Grimes :She the fire started on the opposite end of her bedroom and she had severe hearing loss, but she was denied hearing aids through insurance because she wasn't hearing loss, like she wasn't deaf enough at the time at the time, and so I we don't know if this would. I mean everything's in God's plan, you know, but her neighbors were yelling at her bedroom window for her to wake up, to get out of the house and she passed away.
Dr. Jessica Hissam:Yeah, she passed away in the house because she couldn't hear them. And that still happens today. Because what things that should be accessible is like both smoke, alarm stuff. We have to pay off our pocket to make sure that we're safe too. I was gonna say I watched a show on ABC.
Johnna Grimes :It was called Switched at Birth. I don't know if you and I loved that show, but like just even seeing things that I wasn't preppy to, like when they were sleeping, like when you take your cochlear implant out at night if your husband's not there, like you may have to buy different devices where things flash or lights show, and that's something that we don't even think about or take maybe take for granted just because we're not used to it.
Dr. Jessica Hissam:And that, and that's where that's the reason I was saying this earlier. People don't think about things until it affects them, right?
Dr. Jessica Hissam:right, and that's not across any spectrum Exactly, and that's part of what I'm really enjoying. I like to say right now we are in a huge advocacy surge right now, just across the whole spectrum of different things, from sexuality to race to disability. There is this huge advocacy error going on right now that I think it's really important and one of the biggest points that all a lot of us have been driving home is people don't want to acknowledge things because it does affect them. Right, that makes sense, or it doesn't matter to them until it affects them.
Johnna Grimes :So yeah, Well, going back, this is, this is kind of I mean, I always try to relate things to my brain. I used to get in trouble in the ER a lot because my aunt calls me a social justice warrior Like when things weren't affecting me. Like, let's say, a coworker got in trouble for something and I thought it was unfair. I would go to the boss and be like this was unfair, why did you treat them like that? And then I would put myself in jeopardy and in trouble and my aunt was like you've got to stop advocating for people.
Dr. Jessica Hissam:I said I can't Like it literally affects me to the core.
Johnna Grimes :when other people are getting reprimanded for something that is unfair and unjust, I was like I just can't.
Dr. Jessica Hissam:But I also don't handle it. I appreciate your little justice, because I get it Well, I also don't handle it as well as you do.
Johnna Grimes :I might be very more unprofessionals.
Dr. Jessica Hissam:I've I've learned how to bite my tongue. I have to time and there is a place that's something I need you to take me to threaten with the right thing so example.
Dr. Jessica Hissam:I will not name names, but I threatened a secret committee that was trying to make decisions on deaf people that if I was not on it because there was not there was a lack of equitable representation, representation on this committee and stakeholders that intentionally left out that I was. I had a whole plan. I wrote them a letter and everything. It was a very strong word letter. I emailed everyone they excluded, including the people on the committee, and I also went and I talked to someone I knew up high with in Alabama who encouraged you probably should acknowledge this and it got resolved. But I had a plan Like if that did work out, I was going to send another letter to the next hire upper, and if he didn't respond, I was going to go to the media.
Johnna Grimes :So I will raise health. I love it. I will raise health. Well, I appreciate you educating me and the listeners on everything. Thank you, and in thing something I wanted to mention that you brought up and I never even thought about it. Just this again transcripts for podcast how, if they're not there, someone can't acknowledge your podcast listen to your podcast, so I'm going to start working on that for.
Dr. Jessica Hissam:Yeah, and I appreciate you. The future is simple. You know, when people are actually accessible, they're things they actually get more. Not doing it for the following, but you'll have more people who wants to engage with you because you're meeting their needs, does that?
Johnna Grimes :make sense. Well, that's just something simple.
Dr. Jessica Hissam:Yeah, like something simple that I could do to help and to be honest, a lot of accommodations are actually simple and people don't realize that, but there's such a fear about how expensive things are and how all those things but the things we've been paying for the price of accessibility in our entire lives.
Johnna Grimes :So it's yeah, no, I appreciate all of this. Thank you so much. Thank you for having me Pimp yourself out one more time. Where's your social media? Where can people find you?
Dr. Jessica Hissam:You can find me on Instagram and TikTok, but I would say, go Instagram, because that's where I'm a lot more active. It's just hsquare. So J E, s, s, h, s, q U A R E D and they will be in the show notes for sure.
Johnna Grimes :on a clickable link. You can definitely follow her guys. Go follow her content. She number one. Not only you're beautiful, by the way, like when you mentioned earlier, you're a competitive soccer. I was going to ask you because you look like you're into fitness. So gorgeous girl you won't like in. Her content is awesome, she's funny, she's amazing. Just go follow her and donate to her nonprofit.
Dr. Jessica Hissam:All right, thank you so much for having me. I really appreciate it.
Johnna Grimes :Absolutely. Thank you guys, until next time. Bye.