Sarah and Chris Young aren’t especially unusual: they have traveled extensively; have both been to college (Chris is in the process of finishing his MDiv. at Berkeley School of Theology); enjoy a variety of music; are intellectually curious; and have evolving thoughts about the important roles of culture and theology. As we talked, it was also evident that we shared similar ideas on the importance of community and how that relates to the Church. There were also their stories on some of the difficulties that we as human beings all share in life – struggles dealing with the expectations of others, especially. In a way, as I reflected afterward, the Young’s lives were normal. Here is the thing though: both Chris and Sarah are legally blind. Yet, despite that distinction, they live totally independent, and fulfilled lives. They demonstrate wholeness – beautifully. What follows is a conversation I had with them.
[Radix] Thank you so much for your willingness to share some of your story. If you don’t mind, let’s start off with a bit about you both. I loved so much from our earlier correspondence that your lack of full sightedness doesn’t seem to have limited your lives at all. Can we start off about your sight?
[Sarah] Yeah, I am, for all intents and purposes, functionally blind. I do have light perception, which allows me to distinguish between light and dark conditions. That allows me to tell the difference between day and night, and when there are lights on the road. And I can see some shadows, which I really appreciate. But my condition is called non-functional vision. I was born blind due to a genetic disorder that affects my retina.
[Radix] What’s your story, Chris?
[Chris] I’ve been trying to figure out, for the better part of my life, exactly how to describe my sight. Think of it as looking through a heavily obscured piece of tape or trying to make things out underwater. That’s the closest analogy I can come up with. Without glasses, everything’s kind of blurry and not just a little bit above insubstantial, but the glasses do help. They correct the vision in my left eye to where I can actually make out details, people’s faces, and things like that. But not to the point where I can actually read anything like menus and street signs, though.
For me, blindness is a neurological disorder. I was born with normal vision, but at twenty months old I lost it after I choked on a grape. The loss had to do with brain processing and was a result of brain damage. So it wasn’t just my sight that was affected, but my speaking and motor skills, too. The accident pretty much wiped my sensory slate clean. It was a long time before I got back what I have now, and that required a lot of therapy.
[Radix] Since you are doing an M.Div., how do you get all that reading done?
[Chris] Reading is fairly difficult. It is very exhausting, actually. I prefer audiobooks. I’ve also taken to scanning all of my coursework from college and seminary and then converting it to readable text with the text-to-speech software on my iPad or computer.
[Radix] I love a good audiobook. There is something grand to being read to, isn’t there? Though for me, I realize, it’s different since it’s not out of necessity, as it is for you.
[Chris] I do, too. It does depend a little on the narrator of the book, but I find most of the audiobooks have really interesting readers.
[Radix] How was it for you, growing up? I mean, you had to relearn a number of skills, but did you have a supportive family?
[Chris] Because I am a Chinese American, there are certain traditional values that were somewhat of an issue. Those values include the idea that disabled people should be kept at home and sort of taken care of, and that was made clear to me on one of my visits back to Taiwan, where my mother was from. That idea about disabled people has changed over the years. But there was difficulty growing up. And it was echoed in the Chinese Christian churches that I was a part of as a kid, too. Essentially, people had difficulty acknowledging my condition. They wanted me to read with my eyes and accomplish everything in a “normal” way. It was discouraging. And because of that, my education was more difficult. Being the only visually impaired student at the schools that I attended in my youth didn’t help either. It also made finding hobbies tougher than it would have been otherwise. My parents wanted to help, for sure, but it wasn’t ideal. After high school I had to learn from the ground up. But it was also an opportunity to grow and really discover what I could do for myself, and that helped shape my identity in a positive way.
[Radix] How did that relate to your biblical understanding?
[Chris] I very much discovered God and Jesus on my own, rather than through any particular instruction. But that wasn’t all a bad thing. I listened to a lot of the Bible. Hours and hours of it. I enjoyed the Zondervan narration. It really helped bring the Scriptures alive. But anyway, I came to faith more through my own study, kind of independently. It took time, but the strength was that I didn’t base my thoughts on the varying denominational beliefs. I believed what Scripture told me about myself and the God that was in Scripture, over and contrary sometimes to what the people in church would say.
[Radix] There would be a strength to that in coming to know yourself.
[Chris] In my case at least, it helped cut through all the noise of denominational differences. Later on, I went to a variety of churches. And I think because I came to the faith on my own, I had an easier time figuring out what was what—the Christian ideal or what have you, and the path of Jesus, I think. Not saying that I grasp everything, but I can now appreciate the differences between the denominations better, as well.
[Sarah] What really fascinates me about Chris’s story is that despite having the negative experiences and horror stories that really could have driven him away from the Church, he had this intense desire to get into the Bible and become really grounded in his faith.
[Chris] As a kid, I wanted to know everything that I was being taught. I didn’t want to be one of those people that just went to church or school and took everything in on face value. I wanted to know for myself what faith was really about, and as I said, that kept me from leaving the faith entirely.
[Radix] Do you mind letting me in on some of the horror stories?
[Chris] Well, there were instances when my mom would take me to various Christian events and conferences and ask for the laying on of hands. Now I know why she did it, but at the time I didn’t. Essentially, she wanted, after such a loss, to normalize everything. But when the laying on of hands didn’t work, I was told that I didn’t have enough faith. It was an actual trauma, you know, being constantly told that you don’t have faith.
[Sarah] The thing is, Chris, you do actually believe in healing. It does happen, and when you were young it happened to you. After the accident, you were not expected to even survive. And despite being left blind and deaf and slated to be bedridden if you survived, you did get healing.
[Radix] I wonder how much of this was due to people thinking that being a complete human being is connected to being whole physically. Essentially, that because you didn’t have sight, you were considered incomplete?
[Sarah] I am going to jump in here. I have often been asked, “Why wouldn’t you want to regain your sight?” I tell them that, partly, I never had sight, and so I don’t miss what I never had. But also, I have grown into the person I am today without sight – that is part of my identity. I am whole. But that might be difficult to understand for the person who has lived in a different reality. I actually was invited to join a gene therapy study that would correct my DNA. On the way there I just didn’t feel right about it, so I pulled out at the last minute. It just didn’t feel right.
[Chris] For my Chinese culture, full personhood is connected with being physically normal. Plus, I was the first-born male. That’s important for Chinese people. And for the first-born male to suffer such a debilitating thing was, I think, very traumatic for the family. And very, very difficult to get over. If I would have been “normal” I might have been the stereotypical Chinese kid: playing different sports, playing five different instruments, being encouraged to go to either medical school or law school, or to have some kind of high-powered career. There is a lot of pressure that some Asian kids get put under. But my family has changed for the better too, mindset wise. Especially my grandfather.
[Radix] There are no doubt strengths that could be mentioned, right, concerning your lack of vision?
[Sarah] Yes, there are. Everything isn’t negative. I have very good hearing, for instance. Very good. Someone who’s differently abled will have strengths that another person might not have. When I am walking, I know which store I am passing by the smell and specific sounds that accompany various stores. Even the cash registers have different sounds. We have sight, in a sense, even if it’s not with our eyes. We have sight through the other senses. People in our lives observe this and go, “Wow, how did you do that?” I say, “Well, this is just how I’ve come to identify the world, and I do it differently than you.”
Actually, I consider myself a visual learner. It might sound odd, but my brain is just like everybody else’s. So the visual part of my brain is developed too. I visualize things and imagine, only I do it, in part, in a tactile way. But I visualize images the same as anyone else. People ask how that’s possible. Well, because the visual part of my brain is working, but it’s just not receiving its information through the eyes. But that part of my brain still works.
[Radix] Very interesting. I was just reading about that in Scientific American. Can you talk about tones and other parts of hearing that are important?
[Chris] I can pick out tones very well. Audio tests have also shown that I hear in a very wide range, more than the average person. Sometimes the electrical grid can be annoying to me, though. There is a certain sound that goes along with it. You have probably noticed a unique “quiet” that happens when the power goes out.
[Radix] Totally. That might be because I grew up very rural, though. There is something lovely to silence.
[Chris] While I was growing up, the constant noise and rumbling was annoying. When I was young, I would sometimes dream about what it would be like to submerge myself in a sensory deprivation unit for a few hours, just to get away from it all. It still bugs me, but I don’t get as annoyed by it.
[Sarah] When we were communicating earlier, you mentioned your work with the quadriplegic man, and how there are certain negative sociological aspects to this disability, such as assumptions people make.
[Radix] For sure, and I do hope that you don’t have to deal with all that many.
[Sarah] There is certainly, for some people, the perception that we can’t speak for ourselves. When I was growing up people would often talk to my dad as if I wasn’t there. And I was, like, “Hey, I am right here; you can talk to me.” Or, I have also gotten talked to very loudly. I think I might have a seeing difficulty, but I hear just fine. Also, there is the issue of people assuming that we won’t ask for help and just assuming that we need it. What I call “random steering” happens more than I’d like.
[Radix] Random steering?
[Sarah] Yeah, people just taking my shoulders and steering me to where they think I want or should be going. It’s really annoying. If I need help, trust me, I will ask. What’s also bothering is people being very persistent, and sometimes actually following me and offering help. I can respect that, and I appreciate the sentiment, but I am actually fairly independent. So that’s something we have to deal with. And I’m not the only one with a disability who is perceived as not having it all there or not being able to speak for myself.
[Chris] The other thing is that people can have wrong assumptions about the nature of blind people. When I was in my undergraduate degree, in psychology, I remember being asked during a presentation if I had superpowers like Marvel’s superhero, Daredevil.
[Radix] Ha! Too funny. Though maybe not for you.
[Chris] It is a misconception that some people actually have. And it’s not helpful. I mean, it’s fun to think about, but it’s also a high standard to hold.
[Sarah] That’s a problem with either overestimating people or underestimating them. Doing either of those things is a problem. It’s nicer to be assumed to be on par with everybody, not assumed to be either overcapable or undercapable. We know of a fellow who is blind and can ride a bike using echolocation. There are other blind people who have perfect pitch. But most of us are just normal.
[Radix] “Just normal.” I suppose that is the key phrase. This touches on the idea of being completely human even though you might be lacking a particular sense. You mentioned in earlier correspondence that you have some thoughts on “sound in the context of creation.”
[Chris] The idea of a primordial sound is really interesting. I once roomed with an East Indian guy who talked about that, and how important it is in Indian traditions that things are made out of sound. Scripture has those parallels, too. In the beginning was the Word, and the Word was with God, and the Word was God. In Genesis there is power in the word. God speaks things into existence. Light, the firmament, and everything else is spoken into being. There is this “let there be,” and it’s created by sound. It’s also interesting how much of our religious traditions, both Jewish and Christian, were passed down orally. There was an amazing integrity of Scripture that was kept through the use of the oral. And then there is this aspect of importance that is given to something being said in Scripture. “Jesus said,” “Moses said,” and “you have heard it said.” The word said comes up so often. In my MDiv. I am studying a little on the importance of hearing in the Buddhist tradition. It’s interesting to me that the common refrain from disciple to disciple after they have listened is, “Thus I have heard—”
[Sarah] And then there is the Quran, too. The Quran is meant to be recited. It’s meant to be recited or sung.
[Chris] The Quran example is even better, yes. In the Arabic tradition, writing is actually secondary to the spoken. Also, the benefit of that is that people learn there is greater potential for unification, since there is the face-to face aspect. Back to biblical Scripture, there are so many examples of where we are told and instructed to hear. There was of course the studying aspect of the Torah, but for a long time the foundation was on hearing.
[Radix] I think part of the reason that this is hard to talk about in specifics is the lack of vocabulary when it comes to sound. I mean, it might be similar to trying to use words to describe just what the “Moonlight Sonata” is. To describe something that is in the purview of another sense is difficult.
[Sarah] Yeah, I think I can speak to that. I have been getting into autoharps recently. I am a bit of a nerd, and what I am going to say relates to all stringed instruments. We have labels for different kinds of wood, in terms of tonality. Some are described as warmer, or darker, or brighter, or tinny. But these descriptors are obviously more visual. We know what we mean, but often there is a lack of a specific word to describe what we hear.
[Radix] That relates quite nicely to that sound test that you sent me, actually. The one you used in your class.
Just out of curiosity, how did people do?
[Sarah] There were only a few people during the actual presentation who could distinguish the sounds.
[Radix] I wonder how much we all think we know about something until it comes to using a less developed sense. And that could go in so many areas when it comes to being able to listen. But I’d like to ask, what thought would you like to leave us with?
[Sarah] I’d like to make a comment that connects to the Bible and theology and music. In the Bible, with David, there is this emphasis on sound as healing. Whenever David played his harp, Saul was soothed. I have heard it suggested that David’s harp may have been tuned to an especially healing frequency, you can take that with a grain of salt, but there is something fascinating about how music is connected with healing. In general, there does seem to be an increased interest within Christianity of the healing properties of sound. I think that’s really good.
[Chris] I’d just like to circle back to the importance of the written word and its role in community. There is this idea that reading can be related to individualism, whereas listening collectively to Scripture can increase a sense of community. When I was putting together my statement of faith before entering seminary, I had this image in mind when thinking about the Imago Dei. I think of it like this: we are all carrying within ourselves a shard of a mirror. And in order to have that complete mirror, which lets us view and understand what the full image of God is, we have to come together. But when the shards come together that’s not quite enough, because there would still be cracks. To comprehend God’s image that he’s created us in we need to, by faith, have God fix our mirror, collectively.
[Radix] Oh wow, that is a very beautiful way of describing it, just beautiful. Quite. That speaks in a visual way for the need of harmony, right? Harmony requires more than just one individual sound. When we come together, rightly, there is something beautiful that can be presented and seen and experienced.
[Chris] And I would add that one instrument does not make a symphony. You need instruments in the plural for a symphony. And you also need a conductor. No conductor, no unifying factor.
[Radix] Also very aptly put. Lovely. Well, this has been ever so enjoyable. Thank you for sharing a bit of your story and your very meaningful thoughts.
[Sarah and Chris] Thank you. This has been fun.
*After this interview was finished, Chris contacted me and asked if he could suggest a book that he has, lately, found meaningful. After a short look through the index, I will certainly be adding it to my reading list.
Sense and Stigma in the Gospels: Depictions of Sensory-Disabled Characters by Louise J. Lawrence (Oxford, 2013).