[Transcript of, "Parenting Without Pity: Steve", produced by Rooted in Rights]

SPEAKER 1: Rooted in Rights is partnering with disabled parents to tell our stories of parenting without pity.

SPEAKER 2: If I would've had parents that were aware of disability rights, it would've taken me less time to realize that, like, I could be a mom.

SPEAKER 3: We have to have conversations we are not having.

SPEAKER 4: There are real-world consequences to you not giving your kid the tools to understand where they are in America.

SPEAKER 1: This is a space for disabled parents to talk parenting, and to offer compassionate and frank advice about what it means to raise a child with disabilities. In this episode, Lead Producer Clark Matthews and Program Director Anna Zivarts interview Steve from Bristol, Pennsylvania.

STEVE: My name is Steve Singer. I live in Bristol, Pennsylvania. Right now I am an assistant professor at the College of New Jersey, where I am a professor of education in the special education department. I'm a big guy. I've been shaving my head since I was 16. Since I started balding at an early age I had decided I would just shave. So I've been shaving mead head now for about 20 years. I'm 41. I wear glasses, and I have a sort of growing-out beard right now, that I'm trying to grow. It's a little bit scraggly, but I'm doing my best. So a little bit more about me is that I do have a 14-month-old son. He is the first child that we have. And I'm married. My wife and I just celebrated four years together married. So, I grew up in a small town, and when I was young I had sort of feelings of grandeur that I was meant for something much larger than what I was experiencing. But I could never figure out what that was, and so I experienced a lot of depression when I was younger. My father was a psychologist, and my mother was a teacher. So time went on, and I think they were resistant to the concept that I might have disabilities. I was hearing at that time. By the time I arrived to junior high school, I was experiencing a lot of behavioral problems because I couldn't cope with these ideas of grandiose feelings that I was explaining. So I was having a lot of anxiety, and I started being very destructive, both to myself and to my environment. I was telling my English teachers that I wanted to burn their houses down. Really really horrible things were happening because I was having a hard time coping with the feelings I had inside of me. And as time went on through high school, more and more symptoms started to show. I started cycling between deep depressions, to really high manias where I would start hallucinating my skin bubbling or boiling, and hearing children crying. All kinds of various different kinds of hallucinations. I would sort of go in these cycles of where I was doing really poorly in school, to getting straight As. Still, my parents really resisted the concept of getting a psychiatric evaluation. However my mom, being a teacher, said, "Well why don't we try and have a learning disability assessment?" So I was assessed for learning disabilities, and they did find some. I have a very short working memory, and a language processing disorder. And that makes my writing very difficult. If you see some of my writing, I start a sentence and end a sentence with the same clause because by the time I get to the end of the sentence I forget how I started it. But I've developed strategies around those things. But they didn't really address the problems I was having. Somehow I graduated high school. We had talked about alternative education for me. One of the sort of work-study programs, but that didn't seem to be right. And eventually I did graduate high school, and went to college. In college my psychiatric symptoms continued to worsen. I was having periods of lost time, where I would just be in different places and not know how I got there. And the cycle of ups and downs just got worse. So eventually I couldn't control it anymore. I had to leave school. At this point I was still undiagnosed, and I thought maybe, "Well if I join the military maybe I can discipline these sort of demons out of me." I didn't really have a good concept of what having a mental illness meant. And so I went into the army, and I was in the army for two years, and so two years was pretty good because I had not been that stable for that long a period of time, ever. And then everything fell apart, and I woke up...I say, "Woke up," because I don't really know how else to explain it. But I was in Philadelphia, and so I was a deserter from the army, and that was a very difficult time for me. Not having the ability to work or not being really well enough to work, I was living on the streets. A lot of substance abuse, a lot of partying. And it became very difficult for me. And it was at this time that I was finally formally assessed by a psychiatrist and started treatment. And then...so this was right around the year 2000...1999. And from that period on, I was hospitalized several times, and there was discussions about long-term institutionalization at the Warren State Hospital in Northwestern Pennsylvania. My family wasn't interested in that. I wasn't interested in that. We knew that there had to be a better way. And so my girlfriend at the time, and my mother and I advocated for me to move to Philadelphia from Northwestern Pennsylvania for treatment at the University of Pennsylvania, which has a research institute. And so I moved back to Philadelphia, and I think finding the right treatment and investigating and exploring, finally did help. And with the right mixture of medications, and cognitive and behavioral therapy, I was able to sort of gain some sort of stabilization. So from the period of about 2001 to 2004, I was sort of in this sort of limbo where I was finally feeling a little bit better, a little bit more like myself, and I could live, but I didn't quite know what I was doing yet. And then in 2005, I was living in a garage and one morning I woke up and I knew something was strange. I couldn't quite figure it out yet. I was a smoker at the time, and so I lit a cigarette, and I clicked the lighter and it didn't make that familiar sound. And I smoked a cigarette, I put it out, and it didn't make that familiar sound that was sort of like snuffing it out in the ashtray. So I took a shower, and that's when I realized. The water coming down, I felt it, but I couldn't hear it. And it sort of sunk in that, "Oh wow, I can't hear." Over the years I had been really over stimulated by everything around me. By sounds, by people, by temperatures, by clothing. And this realization that I couldn't hear was amazing. It made the world around me a little bit more tolerable. But I didn't know what to do. So I didn't have any friends or family nearby. Well I had one friend, and so I walked to his house, and I climbed up to his stairs. And I said, "Dude, I'm deaf." But on my way walking to his house, I was walking on the highway, and these big Mack trucks were driving by. They would drive by, and you could count them like, one two and three, and then the wind would catch up to them. Something that might be normally very scary, but they seemed like something from...do you know that TV show, Bob the Builder? Or Sesame Street. Without the sound, these enormous vehicles were just like toys. So that walk was a warm sunny day. I could smell diesel, and the imageries are still very strong in my head because it was one of the most perfect moments of my entire life. I was alone, and for the first time maybe since I...in my longest memory, I felt at peace. And so I got to my friend's house though finally, and I said, "Dude, I'm deaf." And he starts talking and then I realize, "Oh it's a little more difficult than maybe I first assessed. Come to think, this is more like a raspberry." I have no idea what he's saying. I go in, and he starts playing jokes on be because he thinks I'm playing a joke on him. He slaps his hands around my ears, thinking that maybe I'm playing a practical joke. And it starts to sink in a little bit that I'm not. And on the TV, that TV show American Idol is on, and he must have turned the closed captions on when I wasn't looking because they were on the TV. He puts his hand down on my leg, which is very strange for us because it's two guys and it was just not how our friendship was, so I knew there was some gravity to the situation then. I think it was sinking in for both of us. And so I look at him, and I try and summon the words of what to say, and really the only thing that could come to mind was, "Why are we watching American Idol?" And so I stayed there for a few days, and he came up one morning from his bedroom, and he typed on his phone to me, he said, "Are you going to the doctors anytime soon?" And I thought about it and I said, "No. No I don't think I am. I'm fine." And so for three weeks I didn't go to the doctors. And I talked to my mom, finally, after that and I said, "Mom, I can't hear anymore." And at that time, I had a difficult time talking without being able to hear my own voice. So I was more mumbled. I couldn't control my volume very well. It took a while for me to learn to communicate expressively again. But I had emailed her from the library, and she said, "I think you really need to go and this get assessed. You know, maybe there's something else going on inside your body that you need to know about." So I agreed to it, and I go to the doctor, and I go inside the...I'm not sure if either of you have had a hearing test before, but the big soundproof booths that the walls are eight inched thick. And it was really scary. I was afraid that they were going to take away the most important thing that ever happened to me. And they tried. They said...so I have what they call, sensor neuro loss, which is the most common form of hearing loss where the cochlea is damaged. And they said, "In some of these cases, where people have sudden hearing loss, they can inject steroids into your eardrum and let them rest there for a while. And in 5% of those cases people would get some of their hearing back." I was not interested, but my mom looked at me with those mom eyes, and I did it. It was a horrible experience. It was very painful. And nothing happened. I was greatly relieved. That led to a new chapter in my life. I had lived a long time really suffering, mostly because I was ill-informed, and because I didn't know how to get the treatment that I needed. And now all of a sudden I was enjoying who I was and what I was becoming, but I had no money. I didn't have a job. I had no resources. As I said, I was living in a garage at the time, and I go to the vocational rehabilitation, I'm not sure what they call it in DC, OBR, wherever they have that sort of thing. They said they couldn't help me very much because I had not been working prior to becoming deaf. I didn't have any deaf friends or any access, so I just started this learning to sign, by studying a website. I made these huge piles of index card of learning words. Vocabulary. Vocabulary. Vocabulary. Vocabulary. But vocabulary is not language. And I had no one to use it with. And so I decided...I was looking online and I saw that colleges must provide ASL interpreters to deaf students. Voila. I said, "Well, how about I reapply to college, and I'll sit down with an interpreter, and they can either figure it out, figure out communication, or not. It's their responsibility." So it's sort of a bad position to put an interpreter in, but we found someone who wanted to do the job and so they started gesturing, and slowly those gestures turned into signs. And I thought, "Well, I'll either fail out college, but at least I'll learn how to communicate again." I met many deaf people all of a sudden. I started going to deaf events, going to play deaf poker, hanging out with deaf people at the college. And my language skills really just flew off the roof at that time. I didn't fail out of college, actually I fell in love with it, and I never left. So I finished my bachelor's degree in education and went searching for a job, and that's when I realized how hard it was to find work as a disabled person. Again and again I would be offered a job, and they would say, "We'd like to hire you, but you must provide an interpreter yourself," which we all know is against the law. However, I didn't know that was really against the law at the time and they said, "Well we can claim undo hardship." And we all know what that process is like. And so I said, "Well what am I going to do now?" So I decided to pursue my master's degree in deaf education at the National Technical Institute for the Deaf in Rochester New York, where there are thousands of deaf people. And that's where my identity as a deaf person really crystallized. I didn't feel like I had to be a specific thing. I am who I am, and I am the deaf man who I want to be. And then trying to figure out, sort of navigating that identity was difficult because at first I thought I had to be the extremist. There are very different archetypes of deaf people. I felt like I had to fit one of these molds. But eventually I learned that I could just be who I am and the rest of it will figure itself out. But during my master's program, and reflecting on that time before I went into it, I really thought about social justice and how my experiences both...especially whenever I was struggling a great deal with my mental health, how disempowered I was. How easy it was for somebody to take me and restrain me, to bind me to a bed, or to inject drugs into me without my consent. And the idea of not being able to have any power over your own life was very difficult for me. So I continued on with my education, and a PhD in disability studies. And that's where I met my wife at orientation. We were in the same program, and on the first day of school we met, and then the rest was history. Within a year or two we were engaged. So that brings us pretty close to contemporary. So then we had, my wife was pregnant. It started out right from the beginning. I think it's probably very similar to...many parents see it in today's society, is that the whole process was what we thought was over medicalized. His head was too big, so he had to go get this CAT scan, and then his head was too small so he had to go get his CAT scan. And then one limb was shorter than the other. So every time we went to the doctor, there seemed to be something else, quote unquote, wrong. And the entire...what we anticipated to be a beautiful experience became full of fear mongering and tests. To the point eventually where we said, "No more." We switched to the midwife, and we said, "Unless you're certain that there's some kind of situation where my wife or the child is in danger, we don't want to know. We don't care if our child has a disability, or does not have a disability. We don't care." I mean we had hoped that maybe he was deaf, but if he wasn't he wasn't. But neither one of us...we wanted our child however our child was going to be. And I think a lot of these tests were not about the safety of the child, but that the child was going to be normal. So we stopped. We said, "We're done with the tests." And continuing after he was born too. He came out, and he held his head to the right too much. So then he had to go to PT for that, for several weeks. And then after the PT he held it too far to the left, and had to go back to PT. And so we got caught up in this whole treatment plan thing again, until we eventually had to say, "Okay, stop." The doctors now, the pediatrician recommends that, my sons name is Hugo, and so he recommended Hugo go to an audiologist every six months to get a hearing test. Because they don't really know the cause of my hearing loss. They assume it was a spiked fever, but they don't really know exactly what happened. We just refused. He can clearly hear. If he loses his hearing, great. If he doesn't, great. We have the communication skills to work with him regardless of how he communicates. He's growing up bilingually. We spend three days a week talking and signing at the same time, and four days a week only signing. So that's how we're raising him with communication. My wife is hearing. She took one or two ASL classes in her undergrad, and then when she met me she started going to hang out with deaf people and quickly picked up the language in a much more fluent way. In terms of what it's like to be a dad, I'm still not used to it. It's 14 months in. I struggle a lot. One of the things I was talking about with our family therapist the other day was, one of the hallucinations I used to have a lot when I was younger was hearing children screaming in agony. And I would go searching for them trying to save them, and never be able to find them. I can't hear now, but whenever I see my child crying it triggers memories of those times, and it's hard. But disability aside, it's hard being a parent. I'm not sure if either of you are parents, but I knew it was going to be difficult. I didn't realize how difficult it was going to be. The medical world doesn't make it any easier. I think he meant to go to four or five appointments a month, he's at one right now. He's at the allergist because he has a sever egg allergy. We think he might be allergic to milk. We have no idea what he's allergic to. He just keeps reacting to something. So there's always something. Anytime something happens we get sucked into the whole discourse about what you're supposed to do. And we begin it, we follow the treatment plan, we comply, and then very quickly we say, "Oh whoa, whoa, whoa, whoa, whoa. Didn't we say last time that we're not going to do this?" And then we stop. We generally feel that as long as he is not in pain or unhappy that he's fine. So there's no reason to believe that he would lose and arm, but let's say he didn't have an arm. Fine, he doesn't have an arm. That doesn't really affect his life in a quality of life kind of way. And that's the philosophy that we have. So we don't believe in normalization very much because we have a strong family with a strong circle of support. Everyone in our family has a strong background and is knowledgeable in special education and sociology. So I think that we're fortunate in that we're a well-educated family. Not only my wife and I, but also our parents. And regardless of who Hugo becomes, he's going to be loved and understood. So I think that covers the concept of normalization, is it's unnecessary because he can be what he needs to be. When I became deaf, not a single member of my family or friends chose to learn to use sign language. My family pushed me to try hearing aids, and I tried the hearing aids because they begged me, and they didn't work. They tried to convince me to get the cochlear implant, and I drew the line and I said, "No." My mom took a few intro level ASL classes at the local deaf school, which she quickly has forgotten. So I pretty much had to leave all my friends behind, and family visits are just torturous. That was one of the more difficult parts of becoming deaf. As I said, I think from the day I became deaf, every day after that was better than any day before. My life has only gotten better except that I lost all of my friends and family. So I still go visit my mother, go visit my father, and we sit there and we read, or they might write me a little note. But there's no real communication happening. I no longer celebrate my true birthday, which was May 16. I'll celebrate my death birthday, which is September 21st, 2005. And every year I reenact what happened, like how I got up, and what I tried to do, and sort of my movements. Because it was really the most important day of my life. So when we think of deaf gain, we generally think about the little benefits that being deaf has. Not being able to hear a baby cry for many people would be consider a deaf gain. But for me I gained life out of it, because before I didn't know where I was going or what I was doing. And I don't want to say this because it casts a bad shadow on mental illness. So I'm going to be careful about how I talk about it. But for me, I really struggled and becoming deaf meant something. It meant a new chance for me, and that's just how I happened to be. And it worked out really well for me. So when we're talking about deaf gain, I dream. I don't want to criticize my parents too much, but I just imagine how my life would have been different if I had been diagnosed or seen a psychiatrist at age seven, rather than age 21. It's huge difference. And I think what I would love parents to know is, first of all you need to talk about it. You can't be afraid to name it. That goes with any disability. I think right in the beginning it's easy to try and resist it, to deny its existence, to attribute it to something else. But if you just talk about things, completely get rid of concepts of embarrassment, of stigma, of fear, get it all out in the open, and talk about it, because that's the most important thing ,is you can't begin to process whenever you're afraid, whenever parents and children are afraid to mention things to each other. So I think that's step number one. Other things I would like to say about mental illness is that most of the time, or a lot of the time, it's not logical. Parents or siblings want to be able to say, "If I do A, then B will happen." And that's not often the case. Sometimes when we're going through a rough time, whether it's depression, or mania, or having hallucinations, or however the mental illness is expressing itself, it's personal and it's ours, and it's unpredictable. So it's not always logical, and there's not always a solution. Sometimes it just takes patience. And to be there and to not walk away. Because it's not easy. I've lost so many people in my life because they gave up on me, and if they hadn't maybe they would have the opportunity to see the person I've become. I hate seeing people lose their friends and family because of mental illness. There's a certain need to name it, and to have it diagnosed because you can't get services in schools without having a diagnosis. You can't do research online and connect with people and create a sense of community for yourself if you don't know what we're talking about. So I think there are good outcomes for naming a disability, but they stop after building a community and accessing resources and just learning about what's going to happen to you in the future. But I think it can go too far very quickly. Whenever it consumes your life and you're spending too much time going to doctors appointment rather than enjoying yourself. Which reminds me is also the idea of choosing your battles. There's one thing that my wife and I have learned about me, which we applied to our son quite frequently is that it doesn't matter where we go, there's going to be a fight for access, for me. It doesn't matter whether it's a doctors' appointment, or if you want to go see a play, or for school for him. If we fight all those battles, we would be exhausted, we would be bitter, and we won't have a life of our own. So something I really want other parents to know is, figure out what's important to you. Figure out other things that are not so important, and choose the battles that you want to fight. If going to see Peter Pan at the theater is really important to you, then fight that fight. However, if it's not, save your energy. Are you familiar with Spoon Theory, that blog? Right. So it goes back to that same concept of that you only have so much energy, choose to use it on the things that you want to and that you need to, and not on other things. Finding a community, for me, it was fairly easy because of any community, the deaf community is probably the most developed. Just because it's widely talked about, we have so many different organizations, but there are other rising groups as well. I think right now the internet is clearly the most important venue for finding people. You can type into Facebook, or to whatever group and find 10, 15, 20 groups all surrounding any type of disability. So that gives you a lot of options, which I think is great. I think there's two things about that. Is one, in some of the research that I've done people have found stronger senses of community around all people with disabilities rather than their own disabilities. They found more colleagueship, and more understanding, or they enjoy the diversity of being around people with various disabilities rather than specifically ones that had themselves. But I think parents can start right from the beginning, is to find other parents who have children with similar disabilities and just to hand out, and there are meet ups, I think today compared to 20 years ago is much easier to find community. I don't think finding it is the difficulty, I think understanding its importance is the difficulty. I think a lot of parents say, "Oh community, that would be nice." And they're missing how negatively it could affect the child not to be or see other people who are adults similar to them. It's a long life to feel like you're alone. And so if parents could understand how important it is for us to be around others that are like us, I think that'd take us a long way. A child can't be expected to know what they need to be happy, or to have their basic needs met. I think parents have a responsibility to identify, and talk about, and face their own fears because for my parents, clearly this was a case where they understood what was happening somewhere deep inside of them, they had to, but as a psychologist, my mom's a teacher, I would have been a student...had I been anybody else's child they would have reported me to the authorities. And yet they couldn't do that for their own child. I think I would have been safer. I think I came close to dying many times, self-inflicted. And I think those could have been avoided had I received the support that I needed when I needed it. Parents need to look, listen, and create relationships with their children that are trusting so that their children could talk to them, because I'm not sure that I ever felt that I could go to my parents and talk about these things. We were a very 'if you don't talk about it, it doesn't exist' kind of family. And that's not conducive to being healthy. Especially with children with disabilities. The most important thing for parents, or peers, or whatever to truly understand disability is to have continuous positive exposure to disabled people. From playing together, to eating meals together, to seeing each other, rather than being hidden away. So I think projects like this, like a constant exposure to disability in meaningful ways can go a long way. And I hope it does.

SPEAKER 1: Parenting Without Pity is a storytelling resource of podcasts, videos, and blogs that honors the experience and knowledge of disabled parents. On the next episode, Lead Producer Clark Matthews and Program Director Anna Zivarts interview Julie from Fayetteville, Arkansas.

JULIE: And so it's easier put a label on kids than to be patient and help them.

SPEAKER 1: You can find more from our Parenting Without Pity project at RootedinRights.org/Parents.

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