A Whole New World: Stories about having to take on the challenge of a whole new existence

This week we present two stories of people having to navigate a new world.

Part 1: Sean Bearden has never been interested in education, but when he's incarcerated at the age of 19, he finds a passion for physics.

Sean Bearden is a Ph. D. candidate in Physics at UC San Diego, researching the application and development of memcomputing systems, a novel computing paradigm. Identifying as a nontraditional student, Sean went from dropping out of high school to receiving the National Science Foundation Graduate Research Fellowship and Alfred P. Sloan Fellowship. To alleviate the stress that is inevitably coupled with graduate research, he enjoys training Brazilian Jiu-Jitsu at the P5 Academy in San Diego. Visit seanbearden.com to learn more.

Part 2: When Victoria Manning decides to get a cochlear implant, she fears losing her identity as a deaf person.

Raised in Lower Hutt and Deaf since age four, Victoria Manning’s first career was in psychology but her strong sense of social justice and experience in the USA saw her gravitate towards advocacy roles. Victoria led a 5 year long human rights complaint that resulted in the establishment of a telephone relay service enabling deaf, hard-of-hearing and speech impaired people to access the telephone. She co-chaired the Government’s Disability Strategy review reference group and was the inaugural chairperson of the Government’s New Zealand Sign Language Board. One of Victoria’s career highlights was being chosen to represent disabled New Zealanders at the United Nations for New Zealand’s first reporting on its progress on implementing the Convention on the Rights of Persons with Disabilities. She was given a Queen’s Service Award for her services to the deaf and disabled communities in 2015.

 

Episode Transcript

Part 1: Sean Bearden

My story starts out the year is 2005. I’m 19 years old and I’m in Elmira, New York sitting in this small, tiny, stinky prison cell. It’s not exactly what I thought my life would be at that point. I’m set to be there to 2012, and if you remember anything from the early 2000s, there was this Mayan prophecy saying the world was going to end. That’s all I could think about, but it felt like my world had already ended.

Let me take you back a little bit. In 2004, I’m from Buffalo, New York. I’m at a gas station. I walk out. Two men approach me, one of them strikes me. I was concealing a pistol at the time. I pulled it out and I shot him. He survived. I got caught and went to jail.

So back to 2005. I’m in this prison cell and I’m just accepting it. This journey is going to be a struggle but I just gotta deal with it. That’s all I can do is deal with the moment. I’m really not thinking about the future. The only thing I can think about in terms of getting out of prison is how am I going to get another gun because it’s going to be dangerous. That’s just the state of my mind then.

But here, now, I’m in this reception prison and they do a lot of test on you there. So they give us an IQ test and I knew it was an IQ test when they gave it to me. So, being bored later, sitting in my cell, I write to my counselor and I just want to know how did I do on that IQ test. They write me back and I open the piece of paper and it says, “You got a 99 on your IQ test.”

And I was like, “A 99? I got one point lower than average?” Like it hit me in my heart and I didn’t know... like I knew I had scored much higher than that when I was an adolescent and it felt like I broke my brain. Like all those years of partying in my teen, I don't know. Something must have just went wrong.

And I never really cared about education. I wasn’t a good student at all. I went to school just because you made me. That was it. Never cared. And it was becoming apparent now because my main means of communicating with people is through letters and I can barely convey my thoughts through letters. I’m not illiterate but I struggle.

I can’t spell at all. I literally asked somebody, “How do you spell prison,” while I was in prison. They laughed at me. It’s funny in retrospect, right? Like, wow, I didn’t even know how to spell the place I was in. But I kind of accepted it. Just it is what it is. I’m not too focused on that. It’s just I can’t really do anything.

Moving forward, I got my family and friends kind of in the picture. My mother is there and my father is there. My aunt writes me, and I remember she tried like saying, “Why don’t you go to college or something, you know?”

I was like, “I’m worried about being stabbed. I’m not going to college. Like what are you talking about? That doesn’t help me here.”

Sean Bearden shares his story with the Story Collider show at Hawaiian Brian’s in Honolulu as a part of the annual SACNAS Diversity in STEM Conference in November 2019. Photo by Lisa Helfert.

Sean Bearden shares his story with the Story Collider show at Hawaiian Brian’s in Honolulu as a part of the annual SACNAS Diversity in STEM Conference in November 2019. Photo by Lisa Helfert.

And my brother was trying to influence me in other ways so he sends me two books. I remember it was Malcolm Gladwell’s Blink and the other one was Bill Bryson’s Short History of Nearly Everything. I read the dust jackets and I was like I don't understand why he was sending me books like that and threw them in the corner. I wanted nothing to do with them. And that was it.

Eventually, I get moved out of this reception prison and I go to a maximum security prison. Because I’m a violent felon, they put you in maximum security. The first cell they put me into, the guy next to me, he knocks on the wall so I go to the gate and I’m like, “What’s up?’

He says, “What are you here for? How long are you going to be here?” It’s a common question in prison.

So I say, ”I’m here for shooting somebody and I got eight years.”

And I kind of thought I’d get a little respect out of that or something maybe and he was like, “Eight years? Eight years is nothing.” He's like, “I did eight years three times already. I've got 25 to life. I probably have to do it again because the parole board won’t let me go home.”

And it was the first time I ever heard somebody speak so insignificantly about time. Like eight years is nothing? In my head I’m like eight years feels like the rest of my life. I don't know even how to relate to that but I just said, “Okay. Whatever.”

Time goes on and I don't know if you know much about maximum security prison but it’s pretty boring. So eventually I open up those books and I actually really get into this pop science non-fiction books that keep coming out. I read and that’s how I’m passing the time in my cell. So about a year goes by and then 2006 I get moved to a medium security prison.

I’m excited at first because I know I’m going to be close to home. My hometown is at Buffalo, New York. I’m going to be an hour outside of it. People can come visit me much easier. It will be great.

But when I get to the prison, medium security is much different than maximum security. You don’t live in cells anymore, you live in dormitories. And I was in a dormitory with 60 men and I lived in like a cubicle and when I slept at night, you can just walk into the cubicle and assault me. It was very scary. I wanted that cell back because I felt safe in my cell.

But eventually I realize most of the people in the medium security prisons are going home very soon, five years or less. And many of them are going home within a year so a lot of people are talking about going home. They're trying to prepare for the future.

Because this is a lower security prison, they have rehabilitative programs there to help people and I start working as a facilitator in these programs. That’s my job at the prison. And I meet a good friend, Rahim.

Now, Rahim was from my hometown so we naturally just had the casual conversations, exchanging names. Like, “You know Boobie?”

“Yeah, I know Boobie.”

“How do you know Boobie?”

“I used to sell Boobie weed. What are you talking about?”

You know what I mean? Just those types of things. So we became real good friends and I respected him a lot because he was trying to be an intellectual while he was in prison and there weren’t too many people doing that at the time. He wanted to become a businessman, get out. He didn’t want to repeat the cycle.

And he liked to debate. We had nothing but to listen to the sounds of our own voices so we debated a lot. Sometimes it was more argument but I could bounce ideas off of him. I was still into the pop science non-fiction books and he liked hearing about what I was reading so we would go back and forth.

At this time, I’m reading a lot but I’m starting to realize I want more, like this isn’t enough. And I come to the realization I’m just going to have to open up textbooks at some point but I just have this feeling of I want credit for it. And there's really not a whole lot of options for getting college degrees in prison.

But explaining this all to my mother in a visit one day, she goes home and does some research and she finds that Ohio University has an independent and distance learning program. It’s not necessarily for prisoners but prisoners could take it. I would get a real associates and nobody would know the difference. It would be the same thing as if you went there.

So I tell her, “Well, send me the brochure, the course catalog. I'll take a look and let’s see.”

So, I open it up and they got all the courses that I’m interested in. They had math courses, all kinds of science courses. They had physics courses. And at this time, I’m reading about quantum mechanics and things like that. All I really know is it’s weird but I want to know more and so I’m like, “All right, maybe physics is the route to go,” not really even knowing much about it.

But of course you can’t just jump into physics, right? I started out with two Gen Eds. I remember they were Intro to Sociology and the other one was American Government. I open the books, start reading. I love it. But I quickly realize I don't have study skills, like I never tried in school at all. The only thing I would do is what I needed to do to get you to leave me alone. Now, here I am trying to get A’s and I realize I never tried to get an A in my life. Like, literally. Never attempted it. And I want it but I don't know how.

And I’m struggling. I don't know what to do. But I keep trying, and at this time I really haven't committed too much to it so, if I quit, it’s not a big deal to me. I was like, “I don't know. I'll just see what happens.”

Then around this time, that author I had mentioned earlier, Malcolm Gladwell, he's one of my favorite authors at this time, he releases his book Outliers. So when I get my hands on it, I run back to my cubicle, lay down on my very uncomfortable bed and start reading.

I get to this chapter where he's making this point about practical intelligence and how it’s different than the general intelligence that the IQ test tests us for. That kind of intelligence is something you're born with. You can’t really change it. But practical intelligence is something that you have to develop. Nobody is born with it. It teaches us how to navigate complex social situations and overcome obstacles as they occur when we want to achieve the things that we hope to achieve.

And reading this, I just realize I have zero practical intelligence. If I hit a wall, I'll say, “Whoa, I tried,” and I go the other way. As long as I got an excuse to say why I didn’t succeed, that’s enough for me.

But as I’m reading it, I was like, “All right, I guess we gotta just start working on this. I really gotta start working on this practical intelligence idea. I can’t just give up so easy.”

Something comes to mind that a relative had said to me one time about physics. He said, “If you go into physics, it’s a PhD or don’t bother.”

So I say right then and there, “I’m going to get a PhD.”

I literally haven't finished my Gen Eds yet and I’m struggling. Well, I’m like, “All right, I’m on the path to the PhD in physics so let’s do this.”

So I keep going. I’m getting a little bit better. I’m learning how to study. I’m learning how to write essays. I’m conveying my ideas. They're giving me A’s. I complete the course. I get A’s in both but I really didn’t feel successful. It didn’t feel successful at all. Just like, “Oh, they're probably just giving the poor little prisoner an A to make him feel better, right?”

So I keep going doing courses and whatnot and then I get to Calc 1. And I’m taking calculus and I was excited to take calculus and I literally just only did calculus for three weeks. Blew through Calc 1 in three weeks. I tell my mother this on a visit and she's extremely impressed.

I’m like, “Why are you impressed? I did it only one thing for three weeks. That’s not impressive. Like anybody could do that if they really put their mind to it, right?”

And she's like, “What are you talking about?”

And as I tell more people they're like, “This is not normal.”

I was like, “Really?” And I was like, “Maybe I do have a skill. Maybe I could do something with this when I get out of prison.”

This is where it takes off. Once I get there, I’m in calculus and in physics. I’m loving it. I’m taking all of these courses. Years are going by and then, around 2010, my good friend Rahim he's leaving the prison. He gets released. So he stops by my cubicle to say goodbye and we exchange some words.

But the one thing that he says that really stands out, he says, “When I see you on the street, you better be on your way to being a physicist or whatever it is you want to be. Otherwise, I’m going to fuck you up.”

I was like, “Yo, man, what’s your problem? Like what did I do?”

But he was joking. I kind of took it as an insult. Like, “Don’t you see me sitting here all the time? I’m always studying at my desk. It’s the only thing I know how to do. I can’t quit at this point.”

He's like, “Well, yeah. If that’s the case then when I see you, you better be on that path.”

And I said okay and just kept moving forward. I can’t really focus on Rahim. I’m still in prison so I gotta focus on my situation.

A few months go by and then one of Rahim’s Muslim brothers comes to my cubicle. I’m sitting there working on some I believe physics early in the morning. Stops by and he says, “Hey, was just down there in Muslim services and the imam told me that last night Rahim got murdered.”

And I was just, “What?”

And he's like, “But you can’t tell anybody.”

I’m like, “What?”

And he just drops this bomb on me and he's like, “Yeah. Nobody knows. I gotta go inform people. Just don’t tell anybody until it’s on the news.” And he walks away.

So now I’m just sitting there and I have to internalize it, like whoa. And the only thing I could think of was how did he let himself get murdered. Because I was like we should be focused on a path. He had a path. Like what did he do to allow that to happen to himself? And that’s the only way that I could really see it in my mind.

But I just have to internalize it and keep moving forward. It kind of gives me a little bit of a kick to say, “You know what? I really have to focus on my path.”

So taking that, I say, “You know what, I should try to contact some schools before I get out.”

Sean Bearden shares his story with the Story Collider show at Hawaiian Brian’s in Honolulu as a part of the annual SACNAS Diversity in STEM Conference in November 2019. Photo by Lisa Helfert.

Sean Bearden shares his story with the Story Collider show at Hawaiian Brian’s in Honolulu as a part of the annual SACNAS Diversity in STEM Conference in November 2019. Photo by Lisa Helfert.

I’m going back to Buffalo so I contact the University of Buffalo trying to get accepted before I get released. They're open to it. They said, “This is great. You have great grades. We want you to come here. But we just need a letter from your parole officer so we can know that it’s okay.”

So I say, “All right. That’s not going to be a problem.”

So I write to parole and I say, “Hey, could you have a parole officer write me a letter so I could go to school?”

And they say, “No. You don’t have a parole officer because you haven't been paroled.”

This is the first realization that like, “Oh, wait. Maybe this won’t be as easy as I thought.”

But I said, “All right. First thing I do when I get out of prison, I’m going to go handle that.”

So 2011 July, I get released. I actually get out a little bit earlier than that 2012 deadline because of the college work. I remember I gotta pick my clothes that I wanted to go home in. I had these blue shell toe Adidas and these matching basketball shorts that were probably three sizes too big because my sense of fashion was stuck in 2002.

Even when I’m walking out, the guy laughs at me. He's like, “What is this kid wearing?”

But I’m like, “Peace. I’m out of here.”

My mom picks me up and first thing you have to do is go straight to parole. So I go to parole. It’s kind of like they fingerprint you, they take some pictures, they make you take your clothes off to see if you've got gang tattoos, things like that. And then they sit you down in a room and then it’s basically, “what’s your plan?”

So I sit down with my parole officer and I say, “I got a great plan. I intend to college to get a bachelor’s in physics. Matter of fact, I've already been accepted. All you have to do is write this simple letter saying that that’s okay.”

And his immediate response is, “Absolutely not. Not doing it.”

I’m just, “What? Who comes in here asking to go to college and you tell me no? This can’t be happening all the time.”

He's like, “I don't know you. You're a violent felon. You shot somebody. You might just go on that campus and hurt somebody.” He said, “I’m not doing it.”

So in the moment I’m just like I don't know what to do. I just know do what he tells you. “So what am I supposed to do?”

He says, “Get a job.”

And getting a job as a felon is not easy so the only job I can find is going to collections. I start working collections and I hate it. At this time in my life, I’m sitting there just this is not where I thought I would be. I was on a totally different path in my mind and none of it is panning out.

These are when Rahim’s words come back to me because he's not saying, “I don't think you'll do it.” He's saying that, “People are constantly going to be pushing you off of this path.” Like there's going to be obstacle after obstacle, and he saw that when I didn’t. I thought everybody will kind of embrace this because I’m trying to change my life around.

This is when I just say, “You know what, I go back to that idea of practical intelligence to say I gotta stay in my path. Nobody is taking me off this path.” I don't care if he won’t write the letter now. He’ll write it eventually. So I just do what I do and the parole officer will come through.

And he does. Instead of getting into the fall of 2011, I get in spring 2012. I stay out of trouble so he has to write the letter and then I start courses. I was very excited but I was a little afraid. I’m older. I think I was 26 at this time. I’m with these kids fresh out of high school. They're sharp. They're bright. They have all these ideas on what they want to do. They’ve been on this path. They never went to prison and had to struggle.

But I realized that’s my benefit. I had this discipline that they lack. I've been sitting in a prison working on college work. That’s not easy to maintain that level of discipline in that environment. And on top of it, I realize I have this special skill. I have these distorted perceptions of time because I try not to think of time staying in prison so long. And I can sit inside all weekend and study and it doesn’t bother me. It’s way better than being in a prison cell, right? These kids want to go out and party I’m just happy not to be in prison, right?

So I do extremely well. I keep going. I get A’s. I end up getting invited to do research with Dr. Igor Zutic at the University of Buffalo. I end up getting my bachelor’s in physics and applied mathematics. I won an NSF fellowship which I never thought would have happened. And I get accepted to UC San Diego, become Sloan Scholar there. And I’m currently a PhD candidate with Dr. Di Ventra and his group.

Everything is going great but, to this day, I’m still working on my practical intelligence. I still struggle with just wanting to stop all the time. And I just bring myself back to those words of Rahim and just stay on my path. Thank you for listening.

 

Part 2: Victoria Manning

A few years ago, my brother was visiting. He was staying in our house. And my brother is deaf, like me. A couple of years before this visit, he had got a cochlear implant. He was in our kitchen washing the dishes - thank you, Andrew - while having conversations with my small children who were behind his back and this threw me. My deaf brother, like me, had spent his entire life prior to getting a cochlear implant only ever being able to communicate with people when looking directly at them, and here he was communicating quite easily with my small children when they were not in his sight line.

I love my brother dearly but, in that moment, I felt very jealous. He had access to my children that I didn’t have. He could connect with them in ways that I couldn’t. He could exist with my children when they weren’t in his sight line. And I wanted that.

This was a really difficult realization for me because I had spent many years growing and developing a very strong deaf identity. I use sign language and I’m proud to be deaf. And I had a fear that if I got a cochlear implant, it would make me more hearing and somehow less deaf and it would take part of my identity from me. It would take something from me.

Victoria Manning shares her story with the Story Collider audience at the Fringe Bar in Wellington, New Zealand in November 2019. Photo by Gerry le Roux.

Victoria Manning shares her story with the Story Collider audience at the Fringe Bar in Wellington, New Zealand in November 2019. Photo by Gerry le Roux.

But seeing my brother access my small children in ways I couldn’t and connect with them that way and seeing what was possible, that overrode all my fears.

So a cochlear implant is a high-tech electronic device. There's an internal part which is surgically implanted and an external part that looks a lot like a hearing aid. The external part picks up the sound from the environment and processes them and sends those signals across the skin to the internal part. The internal part converts the sound signals into electrical pulses and those electrical pulses are sent down a very, very fine, thin, flexible tube that has been surgically implanted into the cochlea. The cochlea is that snail-shaped part of the inner ear and those electrical pulses they stimulate different locations of the cochlea that are responsible for different pitches.

I had a lifetime of only hearing through hearing aids, and for a profoundly deaf person like me, hearing aids amplify sounds to extreme levels and is distorted terribly. And then that distorted sound goes through the damaged parts of the ear. In contrast, a cochlear implant it uses different technology and it bypasses the damaged parts of the ear to send sound signals directly to the brain. It’s a very, very rudimentary example of the difference between a hearing aid and a cochlear implant.

If before when I could only hear through a hearing aid, if I was in a room with no background noise, completely silent and someone was sitting directly in front of me so I could lip read them as well and that person said to me, “Cheese toast,” I would maybe, if I was lucky, hear ‘ee-oh’. That sound.

With a cochlear implant, now, someone says to me, “Cheese toast,” I hear every single sound of every syllable. I hear ‘ch-ee-ss-he-to-host’. Wow!

So having a lifetime of zero sound discrimination and then having a whole lot, it took me several months to learn all these new sounds that I was experiencing. The day that they switched on my cochlear implant, one of the first sounds that struck me was, after a short time, the audiologist said, “Come outside and walk around and then come back.”

So we went outside and I was standing beside a busy road. And I was, wow. I could hear that the sound of a car coming towards you, it changes and it’s a different sound when the car is moving away from you. I was like, “Wow!”

And within hours, I was starting to understand speech without lip reading, which to me was just a miracle.

And I learned that everything makes a noise. Even running your hand along a smooth surface makes a noise. So yeah, sure enough there was a lot of time then when I kept running my hand across smooth surfaces.

And I often had to ask people around me, “What’s that noise? What’s that sound?” I remember being flabbergasted when I was told that the sound that I could hear was of an airplane flying overhead while I was inside our house with all the doors and windows closed.

I can now hear the difference between S-H and C-H words. Who knew that taxi ‘shits’ were actually taxi ‘chits’?

I can now converse on the phone for the first time in my life, and somehow that’s made me feel a bit more in control and independent.

Victoria Manning shares her story with the Story Collider audience at the Fringe Bar in Wellington, New Zealand in November 2019. Photo by Gerry le Roux.

Victoria Manning shares her story with the Story Collider audience at the Fringe Bar in Wellington, New Zealand in November 2019. Photo by Gerry le Roux.

And I can have more deep and meaningful conversations with my friends and family. A real key difference in my conversations with my friends and family is that before, with a hearing aid, I couldn’t understand so much. It was so hard. It’s like everything I heard was just ‘shhh’ to varying degrees. Whether it was someone speaking close to me, someone speaking far away or music, it was just ‘shhh’. So I would often avoid engaging in conversations all together.

But of course there are times when you can’t. And in those times when I couldn’t avoid engaging in conversations, I would often end up pretending that I could understand and follow the conversation when I wasn’t. That always left me feeling really stink because I felt like I wasn’t being honest with myself and I wasn’t being honest with the people around me who were important to me. But I didn’t have a solution. I didn’t know what to do.

So, now, I’m able to have more deeper, meaningful conversations with my friends and I’m also not pretending so much. I’m not feeling stink about myself so much.

Another thing I really, really love is being able to have a conversation with my husband while giving him a back massage.

So, overall, this experience of having so much more speech and sound discrimination, the effect on me is that I feel more engaged with the world around me. I feel more present and, obviously, a greater affinity with my friends and family and I’m able to relax more in hearing environments.

So although my cochlear implant gives me phenomenal speech and sound perception, I’m not hearing. I’m still deaf. I guess a way to explain it is that I’m hearing through some sort of advanced robotics and, as advanced as they are, they don’t function the same way that a hearing human ear hears.

Background noise is still really hard and there are still times when sounds and words are a blur for me. And I have no sense of direction about where a sound has come from.

One day, on my journey into the world of sound, I came across some music that captivated me. And I was, at the time, watching a movie and, in the movie, it was about a folk singer so there were lots of songs in the movie. Fortunately, it doesn’t always happen, but fortunately in this movie, all of the songs’ lyrics were captioned.

And reading the lyrics and hearing the song and the music at the same time had a profound effect on me. I remember that there was a song about the death of Queen Jane. She had been in labor for nine days and she begged her midwives and King Henry to cut the baby from her side. Hearing the lyrics and the music, I felt like I could hear Queen Jane’s heartache and I could hear the agony in King Henry’s refusal.

I found myself having these physical and emotional responses to the auditory stimulation that I was experiencing. My heart ached and I cried. And I knew that I was crying not just because it was an extremely sad song and an overwhelming new experience but because I’d been through such a struggle to make the decision to get a cochlear implant and then having this emotional and physical response to something that sounded so amazing, I didn’t expect that. It still surprises me now when I have a physical response or emotional response to music.

In that particular movie, there were several songs and I remember having several physical and emotional responses to this auditory stimulation. My heart raced at one point. My breath got caught in my throat, and at one point I remember this wave of rapture went through my body and I was like, “Whoa, what’s that?”

This was all in direct response to something I was hearing and I had never experienced that before. It was completely new and overwhelming. So from that moment on, I had an intense desire to listen to more music.

And I spend every spare moment of my time now listening to music. I get so utterly excited and thrilled by the experience. When I catch up with my friends, all I want to talk about is the latest music I’m listening to and my obsessions. I’m often found listening to music with a big smile on my face, and not because the song is a happy one. It’s just the pleasure of the experience. I never imagined that. I never imagined having that physical response, having the experience of music washing over you and that rapture running through your body.

Coming back to my children who were the impetus of my decision to get a cochlear implant, they're a bit older now. And when we are driving in the car and they're in the back arguing, as they often do, I’m driving along with a big smile on my face because I can hear what they're saying to each other. I can hear how they talk to each other and those subtle tone changes they use on each other.

And another very common scene in our family right now is me listening to music, big smile on my face and the children come running and, “Mama, it’s too loud. Turn it down, turn it down!”

It’s been a few years now but I really feel like here I am in my forties and I’m just at the beginning.