Transcript:
Jace
Hello everyone, and welcome back to 603 Stories, a mental health podcast made by young adults for young adults. I’m Jace, my pronouns are he/him/his, and I’ll be one of your co-hosts today.
Heather
I’m Heather. My pronouns are she and they, and I’m your other co-host on this podcast. Just as a reminder, before we get started, Jace and I are not mental health professionals. We’re just two young folks who are passionate about mental health and sharing these conversations with you.
Jace
Today we will be joined by Corey, who will be sharing his experience with autism and deafness. We will share some statistics, get a glimpse into Corey’s lived experience, and talk about the importance of support and advocacy.
Heather
But to start, let’s meet our guest for today’s episode. Corey, tell us a little bit about yourself!
Corey
Hello everyone. My name is Corey Burrell. My pronouns are he/him, and I’m 26 years old and I’m deaf, with a hearing aid and cochlear implant. And I’m also autistic as well. My favorite hobbies are, or my favorite interesting hobbies, are heritage railroads. I love Star Wars and Star Trek. I love being outdoors, camping, going to the White Mountains, and snowboarding. I love going to antique shops as well. And my dream is to one day work for the railroad and eventually become a certified railroad engineer for the heritage railroads.
Jace
Very nice, cool.
Heather
That’s really cool!
Corey
Thank you.
Jace
I would love to visit sometime, once you’re a railroad engineer or specialist, whatever you said it was.
Heather
We can do a 603 special.
Jace
Sounds good. So, like I said before, to begin this episode, we are going to start by sharing some statistics about autism spectrum disorder and also about individuals who are impacted by deafness. In 2017, New Hampshire had just under 24,000 residents ages 18-84 living with autism spectrum disorder, which is approximately 2.22% of the population.
Heather
In 2015, New Hampshire reported having just under 2,600 individuals ages 3-21 living with autism spectrum disorder.
Jace
And around 17% of children ages 3-17 years old will be diagnosed with some sort of developmental disability like autism, ADHD, blindness, and cerebral palsy. In the training and/or certification process standards for New Hampshire educators and other professionals, there is currently no requirement concerning knowledge or competencies in autism spectrum disorder. Special education early interventions and self-advocacy are the most important tools for autistic people to thrive.
Heather
About 75% of adults with autism are not employed. In 2018, about 85% of college graduates with autism were not employed.
Jace
And as of December 2019, approximately 736,900 cochlear implants have been implanted worldwide. In the United States, roughly 118,000 devices have been implanted in adults, and around 65,000 have been implanted in children. So, with that being said, Cory, would you mind giving our listeners a brief overview of what a cochlear implant is? So those who don’t know can kind of be on the same page as all of us.
Corey
Yeah, sure. No problem. I’d be happy to explain what a cochlear implant is. So, a cochlear implant is basically a hearing device that, you know, attaches to my head and it produces sound in a digital manner, I guess if you want to call it that. I don’t hear through my ears exactly, though, I sort of do. What it does is it, cochlear implants project electrodes through the cochlear in my ear. And it compensates for the damage like a hair follicle, or whatever, that would enable sound to go through my ear and just compensate for that. It enables me to hear digitally, you know, through the cochlear implant.
Heather
How old were you when you received your cochlear implant? And is there a specific age that it’s generally implanted?
Corey
I was implanted at around the age of 11 or 12, or something like that. It was definitely one of those two ages but typically, I think there are babies with cochlear implant, but most, you know, when I went to Hear in New Hampshire, which is basically a school for the oral deaf and hard of hearing, a preschool-kindergarten for the deaf and hard of hearing, basically, I saw kids around that age range that wore cochlear implants. So you can be implanted at pretty much a young age. But I wasn’t implanted until I was like 11 or 12 years old.
Heather
Interesting, okay! I have more questions.
Jace
Did you have any hearing before you got the cochlear implant or is it just something that magnifies the hearing that you already have?
Corey
That’s another good question. So, I did have hearing— well, no, I didn’t have hearing before, so my hearing on my left ear is severe to profound. I still wear a hearing aid on that ear, I still have some hearing left, but the only way that I would hear if I were to use earbuds or something like that to listen to music. Like if you were to speak with me without my hearing aid, I wouldn’t be able to hear at all. And that goes with the cochlear implant also, which, before I was implanted in my right ear when I was 11 or 12 years old, I had the hearing aid. For someone that you know, profoundly deaf on the right ear, although the hearing aid was OK, my hearing was so severe on that ear that I qualified for the cochlear implant and it helped me significantly better compared to using a hearing aid.
Jace
Thank you for sharing that. What led to you either seeking out or getting an autism diagnosis? I was reading when I was trying to find the statistics earlier that most individuals with autism are diagnosed when they’re in elementary school, and it’s very rare for people older to be diagnosed with autism because we learn those coping mechanisms, we learn those skills on how to hide it and to compensate for social cues and things like that. Did you seek out the autism diagnosis or was that something that surprised you?
Corey
I was diagnosed when I was in high school. My parents noticed that I was having a hard time socializing with my peers at school. Basically, I was afraid to socialize with my peers because of bullying, which I went through a lot. And I also had, you know, social differences that my peers would notice. My parents were concerned about that, and so they just decided to reach out to other specialists because I was already going to counseling at the time for issues at school and dealing with anxiety, adjustment disorder, and depression. And they wanted to, because of also having you know some conflict with kids at school, my family was just concerned about that as well. And because of that’s what led them to reach out to other specialists who might understand how my issues work or, you know, just basically that I guess. That’s when they found out that because they took in, you know, what I was going through in school and what was going on at the time and that’s how the professionals figured out that I had autism. And I didn’t really taste that very well at first. I kept hiding behind the fact that I’m deaf and that me being deaf is the only reason why I had that I struggled so much with my peers. My fear was that if I started admitting to others that I had autism, that it would, you know, open the door for me to be bullied even further because I was really, really vulnerable with my peers. I was easily sucked in and, you know, I got hurt so many times.
Heather
I’m interested to hear more about your experience at school. I know you were just mentioning your process with an IEP in high school and having support from folks within school. Do you feel like you received an adequate amount of help at school? Like your accommodations were being met?
Corey
So yeah, that’s a good question. The issue when I was at school was, you know, being understood by my peers and my teachers, my classmates. They’re not understanding my behaviors and my struggles. And again, autism, it’s not just a developmental issue, it’s also a neurological condition as well. You know, there are just some things that are difficult for me because, you know, autism is a neurological condition as well as a developmental condition.
Jace
So, Corey, you mentioned some challenges that you have experienced. What are some things that helped ease those challenges for you when you were in school?
Corey
I remember when I was in school, especially in elementary school, I had one of my speech pathologists I was really, really close with. She really loved baseball and I loved baseball as well. She was a huge Red Sox fan and what I always remembered about her is that she was very, very compassionate. She always spoke to me in a gentle manner. And I really appreciated that. I never, when I was in school, I never had that. I was constantly chastised and bullied by my peers, especially my teachers. And you know, my speech pathologist, she always spoke to me in in a very gentle manner. I remember, you know, there’s been times when I got into a communication breakdown with one of my teachers and I told my speech pathologist about it and she was very compassionate on assuming what my teacher’s perspective might have been. She even said that she would defend me and explain to my teacher my side of the story and how she felt about the situation and because she defended me like that, it saved myself from getting unjustly reprimanded by the principal’s office. That would happen to me a lot when I was little and I would just get unjustly reprimanded for stuff that wasn’t my fault or something that I couldn’t help. And I have to say that I owe so much to that speech pathologist. We related so well, she was much like a sister figure to me. I have to say that I kind of really miss how well she treated me. I never got that much when I was in school.
Heather
You mentioned interacting with older folks and like one of the things my brain went to was, generally, when you’re employed and you have management or someone that you’re working under, there is a significant age gap.
Corey
Right.
Heather
So two-part question. Have you had any struggles in the process of gaining employment, maintaining employment, have there been specific generations or bosses or roles that have been more understanding and accommodating?
Corey
My experiences with employment has been a bit difficult for me in the past. Believe it or not, I dealt with coworkers making fun of my deaf accent or the way how I talk. I had to deal with supervisors being so unwilling to learn how to communicate and work with someone like myself that has hearing loss. And I’ve been chastised for trying to help supervisors, coworkers, and people in general to understand, you know, trying to help them understand how my disabilities actually work. It’s very demoralizing and exhausting to have to go through that and I’ve gone through that all of my life and all I ever wanted was to be understood and be treated equally and have the same equal social opportunities as other people and not just be a part of, though not just with disabilities, but without disabilities as well. It just saddens me that we, that people like myself are just, sort of, not intentionally but seemingly, like we’re forced to be a part of one group of people and that’s just really, really unfair for us, if we want to be friends with those without disabilities as well.
Especially when it comes to working for the railroad, which is really what I want to do with my life, I really want to work for the railroad and one day become a railroad engineer or work my way toward being a railroad engineer, and especially for the Heritage Railroad, because my passion is vintage railroad equipment. What many railroad workers don’t understand is that I can hear just fine with my devices. I can even hear on the radio as well. And matter of fact, I have my own scanner that I listen to, you know different repeaters or railroads as well. Including EMT etcetera, and I find listening to that stuff to be fascinating. What railroad workers don’t seem to understand is that my hearing devices work almost like glasses. Although I admit that hearing devices like the cochlear implant and the hearing aid don’t work well for everyone. But in this case, it has been proven and demonstrated that it has worked well for me.
I love railroad workers. I absolutely respect them. I think many of them are great people. One of my friends is a railroad engineer herself. And yes, she’s a female railroad engineer, which is really, really cool and I find her very inspirational, very tough person. But what many railroad workers don’t know is that railroad regulations permit that crew can use hearing devices. And I wish that the railroad workers would understand that there is a way to work with those like myself without it being without it becoming a liability for them. You know, again, I respect railroad workers to the full extent they work their butt off almost 24/7.
But yeah, that’s pretty much my experiences with employment and what I’m looking to do in life. I just want others to know, you know, my disability, there’s a way to work with somebody who has hearing loss, deaf, hard of hearing, and those with autism as well in a way that wouldn’t be a burden on the employer, or in this case the railroad, and I just think that, especially in that line of business, there’s a little bit of a stigma toward those who are deaf, hard of hearing, and those with autism.
Heather
We are hitting our time a little bit. We’re reaching our end unfortunately, so to reflect on some positive notes because we are all about our growth, celebrating positivity. What are some of the things that have been helpful for your mental wellness over the years?
Corey
Just acknowledgement, I guess. Saying, “Corey, yes, I understand your issues and you know I’ll try to be more accommodating and work with you in a way that is receptive and where you would understand,” because social cues are a struggle for me. And I admit that. All I ever wanted was somebody that I could really, really connect with that, you know, isn’t judgmental and has patience toward my difficulties. I think that’s really important. Another thing I want to mention too, growing up, I was very close with my older sister. She was like, literally, the only best friend that I had. Someone that was very understanding of my challenges and difficulties, especially my social differences. I connect with, you know, especially people that I feel like I connect with on a, you know, sort of sister, older sister, and brotherly type connection. I’ve always felt that, you know, especially the older generation, like my sister’s age. She’s around 37-38 years old and she’s a healthcare worker, by the way. I’ve always felt that that generation has always had the ability to understand my struggle so much more and that kind of connection has always been important for me to sort of associate myself with.
Jace
Well, my final question for you tonight is, if you had one message for our listeners, what would you want them to walk away with today?
Corey
Yeah, that’s a very good question. I really would like those adults with autism, that you know, it’s OK to have a childlike personality or a younger type mentality. Don’t be afraid of that. I have that as well and it’s something that I have embraced. Others might not understand that. I think that it’s very important that that sort of mentality is really, really OK and that it’s OK to be different from others and that you know just don’t be afraid to tell others about how your autism or how your deafness works for you. It’s our right to raise awareness and self-advocacy as well and just don’t let others chastise you for explaining how your challenges and disability works. I truly believe that’s wrong, and nobody should ever do that. I just love the fact that one should be able to express you know how they feel it or how they think freely. And I think that’s really, really important.
Jace
Well, thank you so much, Corey. I have appreciated everything you’ve had to say. I’ve learned so much over this conversation and I’m really grateful for how you talked about the importance of patience and communication, because I think a lot of us forget that in our day-to-day lives. Our society is so go, go, go and so busy that we forget to slow down and keep in mind that other people may have different social, emotional or even physical capacities as us, and it’s OK to have those differences. In fact, it’s wonderful, because it’s what makes us all so diverse and unique, and we need to have more patience with the people around us, no matter what they’re going through.
Heather
Absolutely, and not only does doing that help the individual succeed and grow and thrive, but it really creates opportunities for your relationship with them and others to succeed and grow and thrive. That little extra work of advocating and communicating makes the world of difference over time. Now, before we close out, is there any takeaways you would like to share?
Jace
I guess my biggest take away from the conversation was definitely the patience and the compassion for others and being willing to make the first step and get to know other people, because it can be hard to go up to people and start a conversation and make a new friend. If someone doesn’t do it, then it might never happen, and you might miss out on a really, really great friendship. So, I guess for me, my takeaway from this is take that first step if you can and welcome people in and be that patient, understanding, and welcoming person, because everyone deserves to have a friend.
Heather
I’m going to take a second to reflect on myself as an individual. You know, I have ADHD, I have a lot of anxiety and I am very frequently the person who kind of sits to the side and doesn’t engage. Though in my personal and professional life I work really hard to communicate and meet folks where they’re at, I think I can really take some time and do some work on branching out and connecting with folks and also just making sure I’m, you know, being aware of my surroundings and people around me and making sure that people’s needs are being met, whether it’s seeing something negative on social media and interfering, or at work, or in my personal life, if I’m out and about. I guess a big part of it is just giving myself opportunities to be an advocate outside of 603 Stories.
Jace
So, with that, we’re coming to a close. Thank you, Corey, for joining us today. You were so wonderful to have on the podcast and I learned so much. We really appreciate your vulnerability with us today and good luck with your future endeavors.
Corey
Thank you so much. Thank you so much for having me. It’s such a pleasure to come on and discuss my story, and I truly do appreciate you guys having me.
Heather And always, thank you to our listeners, your engagement with this podcast gives us the ability to continue sharing stories like these from our community. If you liked today’s episode, consider sharing it on social media, and if you’re interested in more 603 Stories content, go ahead and visit us at 603stories.org or Instagram, by searching @603Stories.