TBT: Navigating Deaf Advocacy and Cochlear Implants: Dr. Jessica Hissam's Journey and Insights

I still love this interview to this day , so if you have not listened to it , definitely tune in . It is a good one . I do have some upcoming episodes with Miss Menu . We are going back to the life coaching and things that people have asked us about , so a couple of episodes will be coming up in the next few weeks with that .

So if you're looking forward to new episodes , don't worry , they are coming soon . But until then , enjoy this Take Me Back Tuesday episode . I am beyond excited for today's guest . Her name is Dr Jessica Hissom .

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 .

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 . 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 discuss 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 Dr Jessica Hissom to the show . I am beyond excited to have Dr Jessica Hissom 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 . We do so . I'm so excited that you're here .

Um , kristen Bernard , actually from Coat Stay Femme , is the one who pointed me in the direction of your pod or your Instagram , cause I had not heard about you . And she was 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 well .

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 and I want her to correct me because I'm not trying to offend anyone I'm 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 .

We don't treat hearing loss as emergency and urgent , just like the way if you start losing your vision it's automatically 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 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 in physical therapy school when I was getting my doctorate and technically it's not my scope of practice .

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 .

I know , but you don't think about how far along 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 and over again is a mom's intuition is really good .

Be like , I'll be right back , I'm gonna go grab something in our 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 . And she started to pick up on different little cues .

But that's one of the stories that she shared with me and she started to suspect that I did have hearing loss , just based on , especially , that first three months 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 as a pediatrician which is what a lot of providers do is the clap test .

So your sense of touch probably was more heightened .

Those are the two primary hearing tests , but they test how the ear responds from a nerve standpoint .

We get to the office , they fall asleep post-feeding Gotcha , so that way they can be still enough for the um , not remember ABR , um , auditory brainstem reflex .

Okay , so , because we have to look at the reflex there and that's part of a hearing loss assessment on severity of hearing loss and , um , it helps define what type of hearing loss as well , so okay , so then you , you get the hearing um screening .

That makes sense and there's certain telltale signs that you see in an infinite that you have to look for 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 .

Because , um , 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 with hearing loss who , as at the time quotation marks deaf as I was , which was moderate , severe was my original diagnosis and I said earlier , my actual diagnosis profound , severely deaf .

So , um , we did not find that out till we flew to Pennsylvania and I'll get to that story , but 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 send an early intervention provider to you within 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 free , okay . Okay , yeah , it's part of state because it's federally funded Good Federally and state funded both it's under federal law . It's federally funded Good Federally and state funded , both it's under federal law .

It's known as Child Finder Okay , and that may ring a bell for some healthcare providers when I'm talking about that , but it's called Child Finder and it relates to law , especially Part C and ID .

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 , awesome . So she grew up at a time point in Germany and she understood language acquisition because she lived in Germany from ages four to 10 .

And when you look at the language acquisition windows , we know that earlier is better to be bilingual in different things .

But the problem is that a lot of people don't realize it's the services and supports and the system set up in place which is the reason why America doesn't do a good job teaching or is not capable at this point teaching a bilingual spoken language .

So what happened was with the earlier invention provider is they came in and they told my parents , your only option is to send your child to the school for the deaf and you go and 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 they 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 fueled my mom's research . She's like , surely ? it can't be this only thing , because that's the expectation and that was .

advocacy work , like that is like truly like I'm literally going to get emotional .

growing up , because it was not our natural language of the home and , um , my mom understood what it took and we didn't have any resources up in north alabama to learn asl fluently 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 ?

So for them , the child is basically in a program where they're learning English all day and then learning Spanish at home .

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 into account a parent energy and everything , which is exactly what my mom did because , like in North Alabama , we didn't really have we did not have a resource for us to be immersed into the deaf community and there was actually no like one-on-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 minutes and that's not language acquisition because any type of language you have to acquire , you have to be fully emerged into the language right , which is what my mom understood when she lived in Germany her life . So that was part of her reasoning .

And um . The thing that made our story challenging for us is the earlier intervention provider basically told us um , we will not support you that was the direct words from them to us because we were trying to pursue spoken language with hearing aids and it wasn't . My parents or any tell you that's all , but they're like .

We don't like the outcomes because also the outcome for the school for the deaf at times , fourth grade marine level graduate , and it wasn't my parents or any tell you that's all , but they're like .

We don't like the outcomes because also the outcome for the school for the deaf at times , fourth grade marine level graduate , and it still is today and where is the school of deaf ?

Regardless of the path you choose , people have to do things to extremes or have to relocate , often just to find the right service and supports for their child , and I see it all time across the whole disability that is very sad yeah , so especially rural countries get um , 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 .

Like what if someone's born in community where they they don't have a car , they can't drive somewhere , or that's all the layers of ?

So we found a wonderful speech pathologist who was willing to work with us , but she realized that and she had guts 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 sense because text 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 , um , what so ?

Auditory verbal therapy is a type of speech therapy , but I say there's traditional speech therapy where you're working more articulation and other important aspects . Auditory verbal therapy focuses on the need to learn your auditory pathways in order to acquire a spoken language . Okay , which is known as listening and spoken language . Today , like , it gave the first step .

Anyways , we end up flying all the way to Pennsylvania and we got diagnosed by one of the best pediatric audiologists on day one we sent my parents out 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 this point I was one and a half so I was still young enough and they knew how important those windows were to make sure I have a shot at any language at all and I'm I'm kind of dumb when it comes to like the milestones of kids , because it's never when do kids typically start speaking um as young as well , so speaking as in babbling and stuff ,

but it could be young as um five to six months old and stuff but I need to check with that , as I'm not speaking because I'm not .

But people don't say it's a form of hearing loss . 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 going to have a hard time acquiring or spoken language , if that's the problem .

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 misdiagnosed the whole time . That's so crazy and that's when my parents realized that they , um I was actually um , severely , profoundly deaf , not moderate , severe , and that's a big jump there .

Okay , but um , and it's tricky , I can't just give you like a general answer because everybody's audiograms . That's the what the picture looks like and that's where the speech banana falls .

It gives a better picture when you understand where the speech banana is , just where people are losing , because some people have normal low frequency hearing loss but um moderate high frequency hearing loss but um moderate high frequency hearing loss . Like you , have different variables that make sense .

And that's where , um , 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 was an informed choice , in a sense Like we're actively exploring stuff and working together . And now , in defense of both , that Cobra Point Center had just opened in 1994 .

Okay , um , that copoint center had just opened in 1994 . Okay , so it was very new , because implanting children with cover points was a very new concept . It was considered experimental , which is why a lot of people were not anti-copoint technology but they were hesitant because , it was a new medical technology and there was no studies on the outcomes .

And that's where high quality audiologists who are pediatric and co-appointed audiology specialists come into play because you have to yeah , you have to consider performance related that also work with speech pathologists who understand the principles of auditory verbal therapy okay and what I see happens .

A lot is um parents are not educated , um on part of the decision of doing what it takes and how much therapy it takes to learn to listen with copoint technology , and um there's multiple systematic factors .

We're seeing a huge shift of homo mapping trying to be shift to look like hearing aid mapping and we don't hear the same as hearing aids and okay it's really frustrating because I had even had audiologists had told me at like professional conferences , like you just need to suck it up , wow so .

I'm like , this is my hearing , this is my life , you know and you can't tell me .

Yeah , and like people have the choice to hear and you can still be safe in a lot of ways , because several of my friends who are deaf that don't wear hearing technologies . They rely on vision or other means , you know , and yeah , I'm just saying like we have to be careful .

There's a lot of factors that go into that , and one of the factors being is where copoint center is , because in huntsville , alabama , at the time , they didn't have a copoint center or , um , an audiologist or speech pathologist who understood that .

So me and my mom were driving to burningham 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 , so is it hearing ?

journey and the people we've made and connections that we get . Things Are you the oldest . Yes , I am Okay .

It has to be structurally stable enough and some people have misformed cochleas enough that a cochlear um the electrode can't go through the cochlea to get to the auditory nerve it makes sense . So there's a lot of reasons for cochlear can't see of why somebody does it so there's yeah , there's definitely like , like you said , layers of like deafness , where ?

There could be a range of things , but it's typically be a visual or a signed language okay whereas asl or c or tc , there's like okay different variations .

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 bio recipients in all of Alabama .

I'm like everybody has two ears to hear , why can I not ? And that was legitimately why I wanted to was because I want to see if I could hear better . And to me I was like everybody has two ears 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 bit of 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 .

So it's like um , well , I have a friend who has a traumatic brain injury and they have um lost use of both arms let's put it that way , right .

And if you look at their muscle testing and different stuff as well , you know you can train over time , depending on the type of brain injury , to regain strength , and they may regain full strength if they're one side , but if you don't train the other side for a while and then you try to train again , it's never going to look the same .

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 are there 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 .

And I blame 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 divisiveness in the deaf community . And that's wrong , because it's not a cure , because if I take this off right now , we'd be communicating differently .

Like we have to find other means to communicate . Like I'm still deaf . Right it 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 . That makes sense .

I can be anywhere new york city , and I don't have to worry about y'all exactly , yeah , um , 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 now are you in a relationship ?

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 , depended on lip reading .

But with covid you have the 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 jawline moves , and people don't realize .

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 , um , 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 , um , I did have to take a break because of mask wearing .

I was getting like , um , so the new scars sit right behind your ear . Like if you look like we're to fold ear over , it's like literally right behind the ear I'm wearing ear . I have the old scar which starts from like around the jaw and goes into the temporal , is like a muscle and comes here .

It didn't really close off the answer . That made people nervous , which I understand .

I was in speech therapy three to four days a week down in 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 um , it was all play .

That makes sense , but she was basically immersing what we had learned in therapy into home right and by the time kindergarten hit , I was still being pulled out for speech every um , 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 um when , and people don't realize that . Um , because I was late to identify and late intervened , even though my parents were doing anything I could .

When I hit kindergarten I only had vocabulary total of 5,000 words oh , 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 .

And it took a whole year because I was not deaf enough for insurance Because the FDA at the time only had approved plant implantation for children at only profoundly deaf , but severe profound , so I was on the bubble .

So that's why it took a whole year to get my surgery schedule and be approved to get a cochlear implant at that point yeah , yeah , and so that's where I kind of wanted to talk .

Actually , okay , if you are choosing implication and by six months , you're fully immersed into the early invention system , okay , um , that is from the joint commission on infinite hearing . Okay , and the new guidelines which were passed in um 2020 is now one , two , three , so they're expecting that every state should .

When a child realized they have hearing loss , they're diagnosed by month one , amplified by month two , and early interventions 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 follow up , 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 a lack of resources overall too .

I like to say follow the money on that .

It feels that way sometimes because there are a lot of layers to it . I think quotation marks to get things fixed . Where everybody wins to make access win , it makes sense . Where everybody has equitable funding , equitable support for services and stuff for their language , communication modality and their choice of amplification .

if that's their choice , that makes sense yeah it's gonna take a lot of changes , even on the federal level , and one of them is the audiologist provision as well , because right now , um , 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 .

Okay , 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 .

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 autists on certain things when there's actually not autism to me that people are afraid to speak up anymore .

Okay , that makes sense , so there's all that and it's coming a lot from elitism , which is the belief that all deaf people should not have hearing technologies 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 perspective , your choices , on everybody else , right , and it comes from the hurt of a lot of people don't realize .

So there's oralism 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 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 divisiveness on the community of like the definition of oralism , auditory verbal therapy and and autism and lead to some in general .

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 .

But there's some children who can't lip read and speech read , and that's where having another language which , uh , such a sign language benefits the family right that's totally cool , you know , yeah , and that's the issue with a lot of policy .

Policy is very much politics as well , so a lot of the middle is not being represented well , and I feel like on social media there is a lot of loudness from a certain perspective , and a lot of that perspective um often states and chooses to continue to view that you're not deaf enough because you aren't the same way they've experienced life .

That makes sense , yes , and some a lot also comes from hurt too , because , like these adults who are in their 40s and 60s that were raised in oral schools where they were um not allowed to sign , which is not right .

We don't know what we know now right sense 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 ? And if parents have chosen um here and sign language for child , but then to make their child quotation mark successful with learning to speak , they should never sign .

So I get the hurt there right , that's why there's a lot of disavisiveness in general , because it comes from a lot of hurt .

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 has hurting people like us , as I mean children who were born deaf , who were co-replants and stuff who are more oral .

But we've never been against the deaf community 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 Cocoa Point technology strips you of your deaf identity . Therefore , you cannot accept them as your deaf community .

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 .

Um , one of them I have positive deaf culture experience where I did have interpreter and at my church and stuff , who did teach a sign class and that's why I learned third , fourth grade and stuff 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 appreciated 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 you know , but they were

even the ones that warned my family . Be 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 um 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 families had chosen hearing technology with listening to spoken language , even if they were bilingual , and the bill was very mundane , asl and people won't acknowledge that .

But that's what the root of the bill was . It took away family choice and there's a lot more layers to 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 , um , stood up and started signing the rest of the way .

But I guess if you're in front of congress maybe you shouldn't show your ass , not if you're trying to get bills placed um but here I'm .

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 , um , our funding is about one percent for co-op technology and listening to spoken language , choices for family , for children of hearing loss . So I like to say , follow the money a little bit .

But related to insurance , um , it depends on your insurance carrier , but I do see increased um denials just for um , or very limited coverage it's probably the better word limited coverage for copoint surgery , and they'll cover for your first implant .

But if you need upgrade and that's one of the things that I work on an advocacy standpoint is um , being someone who was born deaf and plant copoints young , I have to cover the cost 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 .

It's not echo point you know , like , if we have a choice , we deserve to have be able to have coverage for the choices that we have to and continue those you know .

Is there's this perspective 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 .

You should be here and try to get them to see my side . So I actually needed to hear that so thank you for saying that .

So when we look at the medical model , everything we're um that is a 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 into physical theory in the first place , um , I've always have loved moving my body .

I was a competitive 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 , um , I went to college and stuff and I just started pre-pharm because I was debating on that , I liked chemistry , realized that was not for me , uh , that was not for me .

And , um , so I started my path for physical therapy and stuff and , um , I knew physical therapy , like I could work people who have , um , 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 . I had thought about primarily doing neuroscience PT , so stroke to my brain injury , yeah , all that , um , that was always fascinating to me , because not the science behind it , but it's in a way to me , it it was a form of ministry for me .

Like , I get to be people meet people where they're at and encourage them to go somewhere , but also like it's a small baby step process . I think that's one of the things in medical mall we go from a to Z but we don't think about a to Z between . 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 ally professions work great with medical professionals , writers because we can help you guys figure out where that steps fall in between to get somewhere that makes sense .

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 , and that's meeting them where they're at right , but it doesn't mean that you're setting the bar low right and there's that balance , so

with advocacy and stuff .

And when I got to I had other friends with disabilities and I started to get more comfortable with my disability identity . But it was because I was finally 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 of me .

Like you know , I am deaf because this is how I live my life .

My friends ask me , like not what you need , but they want to genuinely learn about my life and stuff and experiences as part of friendship . But recognize like , hey , when we are roommates this is what looks a little different than your hearing roommate , right , you know .

So in advocating for myself and stuff , advocacy just became a lot more natural , because advocacy really is just storytelling . It's a way of educating and it's also storytelling as well . That got really natural to me and at the time , with social media , I was more of a fitness content creator , actually in Huntsville and different stuff .

By the 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 . 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 . Okay , when I'm learning test , find the interpreter stop sign because he had once he had believed that was deaf and I was faking it .

And I'm like , okay , this is enough , because I had a couple other experiences up to that point Sharing different stuff , they're like , but you're not really deaf Like you're hearing . You were helping technology , so you different stuff , they're like , but you're not really deaf like you're hearing . You work helping technology , so you're not really deaf .

Yeah , I'm like okay . And sometimes it feels like , um , 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 . So I was looking , I'm like , okay , where can the safe space 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 , um , pg 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 grad school is the worst of their lives but I actually did really good in grad school too .

You know , for all of us .

I had just freshly graduated out of PG school and I took advantage because patient case low had dropped a little bit and took like almost every class to get my pelvic health specialty wow and so because that was always fascinating to me just how the whole body works , because with pelvic health it's a very much of a full body approach to me compared to other

aspects of physical therapy . I like that full body approach . Um , I'm a bit of a . I'm really into functional medicine as well . So um , because all immune issues , my family okay yeah , my mom has all immune issues and my family is like genetic , so we've always been pro functional medicine as well , but anyway .

So pelvic health to me was bridging PT and functional medicine as well . So , that's where I got started . But you know , in part of advocating not just for my deafness stuff , I was also advocating for my patients . So , I got really comfortable advocating to doctors .

I got really comfortable advocating to even insurance sometimes good public health was necessary , so it was more natural to me .

And then but I continue to see this trend there really wasn't a safe space for all people and that have are deaf and have different choices that make sense , right , there really wasn't 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 pelvic health stuff so

I was still working as ortho only so I was seeing two patients every hour wow okay , with mask on , um , I would go to work and I would come home have enough energy just to cook and stuff and my husband , like we , trade shorts and 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 .

And I was like oh , 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 , so so so listening fatigue applies to the concept across the whole spectrum of the deaf community , people who have hearing or choose to use hearing technologies .

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 code as 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 . So I'm relying more on listening energy to make sure I comprehend information .

But we worked really hard to hear as well , we do that make sense , sense yeah but you still worked hard and you still have work hard every single day , yeah , so to me that is actually admirable it can be , but it's just our life that makes sense .

People and 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 spumination , and it does come from good intents , but people don't realize that really it's just the way we live .

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 yeah and like there's other ways to 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 , um , 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 right , I mean so .

Yeah , I mean , but it's good , because we need professionals who are bilingual in different languages too oh , I agree , and I wish it was taught in like med school , nursing school .

Okay , and calling for equitable funding and equitable representation across that make 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 funding of the choice they had 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

through the lens of one perspective . So that's where 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 got to start all working together . 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-pilot user . Oh , my technology is not perfect , but this is how I live day to day . Take it .

But there's policies and laws trying to be made based on one perspective , and it is politics in a way so that's where I started , but really it's story sharing you know , so it became more and then um , during covid I lost access to my mask , I was exhausted and everything and um , and that's why I started and that's really .

You know , me and 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 again , because I was coming home like I am living everyday life as a deaf person , as a deaf physical therapist , and people are 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 literally 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 faced discrimination too . I faced discrimination all around and like I'm fine , tooth and nail , trying to get the support that I need and everything .

And so I took time and this was 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 continue to see things when we I 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 of that .

But 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 am 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 .

There is a seat at the table for all of us , because there's nothing about us without us . All Right and the emphasis on the word . All that makes sense .

Language resources , but there's a lot of resources for listening to spoken language , like it's all funding and stuff you know . So I get it .

Out of a couple issues that we're seeing , especially in 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 lexi copoint users because we were born deaf or we were

implanted at a young age and lived copoints 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 by over age 60 , like the average age for adult cookpoint recipe 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 pediatric co-point users that grow into adults and the protocols don't match right , if you have it , you should continue it .

So that's where that piece and collecting data is what we're going to do over time is just demonstrate like this is a population that you guys are deliberate ignoring , and we're seeing this on international scale . So I've worked with some other people with that . So that's one aspect and plus , co-parent services are really not covered under insurance at all either .

But what if you have ?

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 and some it's manufacturer faults ? because , manufacturers are training audiologists . What to do ?

To work with other plants is a specialty , okay just like I went to pt school and then I worked on my specialty as public yeah , that makes sense , because I was like is it because they're not learning it in school and so they're afraid ?

It's like it's not all bad , yeah , but the thing is they're reviewing technology stakeholder group , which is us because we have lived our whole life and we'll face multiple revisions . And one thing 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 somebody's gonna live for 20 years , okay , and so now we're seeing a lot more revision surgeries of my age group .

Okay , so there's a lot of layers to this as well . So with next legacy audiology went to help support people , because switching and activating someone from an analog processor to a digital is a shock to your brain and you have to be very sensitive . You have to program based on performance .

With that okay , and 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 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 when it was activated .

That makes sense 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 .

So that's part of next legs , the audiology's objective and the other objective is pediatric hearing aid 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 hearing screenings um , 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 um , not service , but we're trying to help fill the gap that we're seeing basically in north alabama yeah and nationally related to cover plants and um . Providing hearing services and quality hearing services and audiological care to families who are next-gen deaf so starting that clinic ?

That makes sense , yeah but , um , it just takes time with the government right now , but we're developing . We're treating ourselves right now as um we can . We are acting right now like we know . People need this stuff , so we're working right now .

How does it look to have an IEP for a child who's deaf and hard of hearing , with hearing technologies that use listening spoken language ? How does it look to have an IEP or section 504 plan for a child who's bilingual ? Like that's the things that make sense . Like you have to be very careful the wording stuff .

But the goal of our IFC 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 as parents are really difficult work , they're just , they just do understand the rights Right .

But like there can be some common ground .

So it's actually a great tool to use an advocate outside . The parent has the right to bring anybody they want to the iep meetings . Okay , and it's 504 meetings , 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 .

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 , in a sense , 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 nonprofit .

That makes sense , yeah , and um through all that . It does shape some of the public policy that we do .

Where would you tell them to go ?

And then our nonprofit Instagram , which is linked on my Instagram , is kanji def , which is C , a , n , g , d and then but where the 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 of advocacy and educating is social media .

Yeah , it is , and that's something I'm working as an 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 andprofits 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 yeah , yeah .

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 we don't know if this would I mean 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 .

I don't know if you and I loved that show , but like just even seeing things that I wasn't privy 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 and that , and that's where that's the reason I was saying the stats earlier .

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 , it makes sense , or it doesn't matter to them until it affects them .

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 . I said I can't . Like it literally affects me to the core when other people are getting reprimanded for something that is unfair and unjust .

Yeah , I was like I just can't .

It was a very strongly word letter . I emailed everyone they excluded , including the people in the community yeah and um , and I also went and I talked to someone I knew up high within Alabama who encouraged you probably should acknowledge this yeah , and it got resolved .

But I had a plan like if that did work , I was gonna send another letter to the next higher upper and if he didn't respond I was gonna go to the media yeah , so I will raise hell .

So I'm going to start working on that , for yeah , and I appreciate you .