Today’s episode is Sy having a conversation with Jonathan about living as a blind Christian, how disabled people think about disability differently, the church’s interactions with disabled congregants, ableist theology and church practice, and a lot more.
Resources mentioned during the show:
Sy’s list of disabled people to follow on Twitter
Disability and the Church by Lamar Hardwick
The episode of Shake the Dust with Lamar Hardwick
The Disabled God by Nancy Eiesland
Shake the Dust is a podcast of KTF Press. Follow us on Facebook, Instagram, and Twitter. Find transcripts of this show at KTFPress.com.
Hosts
Jonathan Walton – follow him on Facebook, Instagram, and Twitter.
Sy Hoekstra – follow him on Twitter.
Our theme song is “Citizens” by Jon Guerra – listen to the whole song on Spotify.
Our podcast art is by Jacqueline Tam – follow her and see her other work on Instagram.
Production and editing by Sy Hoekstra.
Transcript by Joyce Ambale and Sy Hoekstra.
Questions about anything you heard on the show? Write to shakethedust@ktfpress.com and we may answer your question on a future episode.
Transcript
Sy Hoekstra: Basically every disabled person has had the experience of Christians trying to heal them. And there are genuinely a ton of disabled people who are not Christians because of this, because they were objects for people, right? That you were objectified insofar as people wanted to see you healed. Like you are here to be cured, you're not here to be loved and supported.
[The song “Citizens” by Jon Guerra fades in. Lyrics: “I need to know there is justice/That it will roll in abundance/ And that you’re building a city/ Where we arrive as immigrants/ And you call us citizens/ And you welcome us as children home.” The song fades out.]
Jonathan Walton: Welcome to Shake the Dust, leaving colonized faith for the Kingdom of God. A podcast of KTF Press. My name is Jonathan Walton and I'm here with Sy Hoekstra. Welcome to the first of our monthly bonus episodes that we're doing for y’all, our wonderful subscribers, while we're in between seasons of the show. Thank you so much for your support. We literally could not do this without you. Now, just a quick reminder before we get started, make sure to follow us on Facebook if you don't already, also on Instagram and Twitter @KTFPress. Give us a rating or review on Apple Podcasts or wherever you're listening. And remember as a KTF subscriber, you do get a private podcast feed that has all the regular and bonus episodes of this show in one place.
Just go to any of our bonus episodes at KTFPress.com. Click the listen in Podcasts app button on your screen and follow the short and easy instructions to add that private feed to your podcast player of choice. All right, let's get started. Sy, what are we talking about today and why are we having this conversation?
Sy Hoekstra: So today I am going to be talking a little bit about what it's like living as a blind man and what that does to my relationship with others, my relationship with God and the church and myself. We are talking about this because we at KTF Press are trying really hard to center kind of marginalized stories that you don't hear a lot about, or that are kind of deemed less important. We just want to explain, give people I think more insight into the personal side and the importance of why it is that we at KTF Press spend so much time trying to make things accessible, avoid using ableist language and just sort of be more inclusive of disabled people in a way that the church unfortunately is not all the time. So that's the long and short of it.
Jonathan Walton: As we're having this conversation, if thoughts come up for you, always remember you can send an email or ask a question or shoot us a voice message, because this is a learning curve for me as well. So I'm very excited about this conversation, and I'm grateful to Sy for actually modeling what we hope to do with this entire Shake the Dust podcast project.
Sy Hoekstra: The email address is shakethedust@ktfpress.com if you have any questions for us, and we may answer some of those questions on future episodes. Also, by the way, feel free to tell us if you have any ideas for future topics of conversation on these monthly subscriber episodes. We would love to hear from you.
Jonathan Walton: So let's get into it Sy. Can you give us a little bit of a background just on how you became blind and how you navigate the world today?
Sy Hoekstra: Yeah. So when I was 15 months old, I was diagnosed with retinoblastoma, which is a form of retinal cancer. It's a just random genetic mutation that happened to me. It's not caused by anything that, or not anything that we know of anyways. There were enough tumors in my right eye where they actually had to remove the eye entirely, and then in my left eye, they treated it with radiation, meaning they basically killed the tumor with a laser. That took most of the vision out of my left eye, but not all. So I do have some vision, but I identify as blind because most people kind of within the blindness community want more people to be able to like claim that label as something that's, they identify with and it's positive and it's not a negative thing.
And also because the reality is that most people, even people who don't perceive light, like who literally cannot, you know, there's no information flowing from the light rays that enter their eye to their brain, they are what everybody else would think of as completely blind, like their visual cortex still goes, meaning it still is functioning, it still presents images to their mind. There — a lot of studies have now shown actually that like, well really confirmed what blind people already knew, which is that even people who don't see anything, visual images get placed in your head basically through your ears. Like the sounds that you hear around you can actually create activity in your visual cortex and fully blind people can see to a certain degree in that way.
So anyways, yeah. Blindness is more complicated than what people think, is kind of what I'm trying to say. In my particular case, like I don't, there's literally no eye on my right side, and I guess just like the plasticity of my brain, kind of just rerouted all of my vision, all of my, all of the neurons to my left optic nerve or whatever. And my right eye, it's like it doesn't exist. Like people sometimes ask me, “Is it just like you see blackness out of the right side of your, you just see a bunch of darkness or whatever?” I'm like, “No, I see literally nothing.” It's like me asking you, how much do you see out of your shoulder?
Jonathan Walton: [laughs].
Sy Hoekstra: Like there's no eye there, you don't see anything. That's how it is for me. I literally have half the visual field of other people or of people who have two eyes. Okay. So how do I navigate the world around me? So as a kid, I was kind of taught a lot of tricks for how to like map places in my head. I'm very good at mental mapping. A lot of blind people are. Like, you teach us a building or a neighborhood or whatever and we just are very good at keeping track of where we are in our heads, because we've been literally trained on how to do it. I use a white cane. I did not use a white cane my whole life, my vision was actually … not my prescription, but my like focus, actually used to be a lot better than it is now.
So I did not use a white cane when I was younger, even though I maybe, it could have been helpful, but so now I use one. I have for 15 years or so. So I get around with that. I do all my work using a screen reader, which is basically, if you're not familiar, it's like a very complicated piece of software that again, you get trained on, you learn how to use it. Complicated is the wrong word, more like sophisticated. It basically just changes the way that you interact with the computer entirely to make it an audio experience. So it's like you don't use the mouse much, right? It's just like a ton of keyboard shortcuts and different keyboard commands, and then you have a computer voice just like jabbering away in your ear.
That's true on my phone too. Like all iPhones and Android phones nowadays come with like a built-in screen reader. There are several different screen readers you can use on a Windows, on a kind of PC, which is what I use. So basically what that means is I'm able to use any website or any program that is built in an accessible way, just like anybody else, but you can also, if you're like … I'm not a web designer, I'm not a programmer, but people who make computer programs, people who build websites can build them in such a way that screen readers, the programs that blind people use don't have access to all of the information or the functions that are contained within the website or the program.
So coders and programmers, software developers, everybody now who just makes anything on a computer have sort of become like really key to accessibility in a way that was maybe not predictable, or not, that's not true, blind people saw it coming a long way off, but to most people it was not predictable 30, 40 years ago. So yeah, basically a programmer can build a website in the same way that an architect can build a building without a ramp. A programmer can build a building without a digital ramp for a blind person to have access to it. That's kind of the metaphor or the simile a lot of people use because it's a familiar one for a lot of people.
So then on top of all that, I just have a million different ways that I go about doing everyday things. Some of them I figured out on my own, some of them I learned from other blind people. Blind people actually have like, in the US there are a few different schools you can go to and like if you, either if you're young and you want to get trained on how to do everything, or if you become blind later in life, you can go and spend like six months or a year or whatever, just learning how to live as a blind person from other blind people. I never actually, I didn't do that, but it's quite advanced. People have figured stuff out, you know?
And if you're somebody… this is kind of why people don't like these, put a blindfold on and walk around and try out being a blind person to like gain empathy, or like spend a day rolling around in a wheelchair and see how you, what you learn about the world. Because when you do that you're kind of, all you're learning is how disorienting it is when you like vary the, like the first day that you become blind and you have no idea how to actually do anything. That's like, that is not my experience at all. You're really, you're not learning much of anything about my life if that's what you're doing. Yeah. Because the ways that we cope with the world are thoughtful, like we've thought about them a lot, we've shared them with each other, we know how to do a whole lot of things that would just never occur…
Like between me and my sighted wife, I do the vast majority of the cooking in our household. Most people would be like if you just put a blindfold on their face and say, “Go cook me dinner,” would be like, “No, I can't do that. I'm going to get on the phone and order pizza,” you know [laughs]? Anyways, that's a long-winded answer to that question that you asked [laughs].
Jonathan Walton: Okay. Well, I have two or three things to say to that. One, as someone who has tried to build bridges like that, I literally have blind-folded 50 people.
Sy Hoekstra: Yes. And we've talked about that.
Jonathan Walton: And we’ve talked about that, right, and like how that's unhelpful, right?
Sy Hoekstra: Yeah.
Jonathan Walton: Like, I think owning, just confessing that, and then having that conversation with you is something that’s helpful because, even for me as someone who's in a subordinated group, like I'm a Black person in America, right? I'm not fluent in all things, reconciliation, shalom, and justice, right? And so there's places to learn and grow. So along with that, like you, as you were talking you gave a lot of different, like vague modifiers, right? So you were like a lot of, or people do or whatever. So most of the information that I know about being blind prior to meeting you and getting to know you is through media, right?
Sy Hoekstra: Yeah.
Jonathan Walton: So watching Ray Charles like fry chicken in Ray, or like …
Sy Hoekstra: [laughs] Jamie Foxx.
Jonathan Walton: Or yeah, Jamie Foxx fry chicken actually. It wasn't Ray Charles [laughs]. Or even Christine Ha who won the third season of MasterChef as a blind chef. Right?
Sy Hoekstra: Oh, yeah.
Jonathan Walton: Like when you say a million little things that you do in your household and little things that you you've learned, or even talking about a school for the blind, like can you explain a little bit about like what that dynamic every day is like? I know I speak for myself and it may speak to other people when the way that blind people are portrayed is always needing help. Like I'm standing on the street, it's courteous for me to say, “Hey, do you need help?” If I am in the store and there's someone looking for something or trying to find something, it's like, oh, I should ask this person for help. Are things like that helpful, or is it like you've actually navigated the world, and there are other ways that we can be helpful? So could you describe that everyday stuff?
Sy Hoekstra: Yeah. Interesting. So I guess the first thing I'll say is, actually blind people and most disabled people, the preference is that you do not ask to help. The preference is don't provide help unless asked. So for blind people, what blind people sometimes say is, if you don't think that I know that you're there, then maybe like cough or take a couple of steps or something just to let somebody who only has audio cues know that you're around in case they want to ask for help, but that's it, actually. Because, the problem is that the … you know what, let me tell a story. There was one time I was coming out of the subway and I was coming home. I had like gone to the doctor or something.
I was coming home from work, but a different route than I normally came home. So I get home on a different subway stop than I'm normally used to. I walk out of the turnstiles and there was like half a second where I go, “Oh man, I don't know what's going on here,” because I had just forgotten that I was in a different subway station. I was on like commuter autopilot, just like everybody else. You know? So I stand there for like, maybe, probably like one second while I'm realizing, “Oh, okay. That's the direction that I have to go.” In that like one second, somebody comes up to me and asks basically if I'm lost and I need help getting somewhere.
I politely say, “No, no, it's fine. I just forgot where I was going for a second. I know where I …” and they moved on. So what happened was I turned left, and at this particular station, you make a left when you come out of the turnstiles and then you have to turn a right again to go up the stairs. And I forgot that I had to turn right again. So what I did was I walked toward the wall with my white cane and then my white cane tapped the wall that was there. Then I go in my head, “Oh, right. I have to turn right and go up these stairs.” So then I turned right to go up the stairs. And this woman who's watching me then says to me, like in front of a lot of people and quite loudly, “You shouldn't have refused that man's help. You wouldn't have gotten lost.”
Like she says effectively, you were too stubborn, you were unwilling to accept help, and that's why you're all confused and disoriented now. Now, the thing is, to my mind, what I have just done was a perfectly successful navigation of this subway stop. That's what the cane … the cane is for that purpose. The cane is for me to like collect information from my surroundings. And if it taps a wall and informs me of a fact that there's a wall in front of me that I forgot about because I have to turn to get to these stairs because I'm in a different subway station, then the cane has done its job and I have successfully navigated the subway station, right?
Jonathan Walton: Right.
Sy Hoekstra: This woman though looks at me and thinks that I am a stubborn, ungrateful, blundering failure. So just the chasm of difference between how I saw what happened and how she saw what happened is why we don't want people to ask us for help. It's because the fact of the matter is people have no idea when we need help and when we don't. So when I, but when I was commuting, it was rare that I would get to work and back in a day without somebody asking a question like, “Where are you going, sir?” Or like, “Do you need a seat on the subway, sir?” or whatever. Which I absolutely do not. I'm blind, my legs are fine. Right?
[laughter]
Asking some question like that, that reminds me that people have no idea what my life is like, they have no sense of when I need help and when I don't, and they're like, they mostly think that I am in great need of help to do the simplest tasks. Like when somebody asked me, “Sir, do you know where you're going?” when I'm walking down the street or like, “Can I help you?” or whatever, it's like, you have seen me in the morning, I was a lawyer, wearing a suit, carrying a briefcase, walking from the subway to the courthouses, just like eight million other lawyers in New York City that morning, and you looked at me with my cane and you think that I'm incapable of getting to work.
That I need your help to … So it's just like the problem is it becomes so demeaning and such a reminder of how isolated you are and how much people just don't understand you. So it's not just that it's unhelpful, it's like actively degrading psychologically.
Jonathan Walton: I can feel the emotional weight of what you're saying, but what I noticed was that, instead of saying I, you said you.
Sy Hoekstra: Yeah. Towards the end, I started saying. Yeah, yeah.
Jonathan Walton: Towards the end. And I think for me, like when I talk about things are really difficult, to lessen the emotional weight of it or to distance myself from it a little bit, I will say, you.
Sy Hoekstra: Yeah, that's what I was doing.
Jonathan Walton: Yeah. So I think saying, “I …” I think if you say I, we hear you, we get you, we feel you, and thank you for entering into that with us.
Sy Hoekstra: No, that makes sense, and that's a good emotional health reminder.
Jonathan Walton: Yeah. So like, as you were sharing that, something that struck me is that I assume that I know what's best for the people around me, and I don't. Again, thank you for sharing those stories. I think they just do an enormous amount of orientation for us, or for me as a sighted person to be able to enter in to your world, that is a real world, not a less world, but a different world that I need to be oriented to so that I can learn and grow and understand what your life is like. Now, can you explain a little bit of what the social model of disability is and why that's important? Because I think we've talked a lot about your individual life, but what are some social implications for, yeah, about what that looks like?
Sy Hoekstra: Yeah, totally. So the social model of disability is kind of the preferred way of looking at disability from a theoretical standpoint for the disability rights community. It's, I say theoretical standpoint, that sounds loftier than it is. It's just, it's kind of the way that disabled people think about themselves and their disabilities, as opposed to how … It's actually mostly contrasted with how doctors think about disabilities. So it's usually the social model versus the medical model of disability. So the medical model is how a lot of people think of a disability, it's something to be cured or fixed or worked on, basically through therapy, through medicine, through whatever it is. Basically it's a deficit.
The social model of disability mostly focuses on how the society around a disabled person creates their disability. So basically the question is if you see somebody in a wheelchair at the bottom of a set of stairs and there's no ramp, do you think the problem is the wheelchair user’s legs or the stairs, right? So the medical model says the problem is the person's legs and we need to try and fix them through physical therapy or whatever. The social model says the person who screwed up here is the architect. And that's true with like my, with what I was talking about earlier, with like coders and programmers and everything.
I am perfectly capable of navigating a website as a blind person with my screen reader that I have, that I know how to use. The only reason I'm not able to do it is if you made your website inaccessible.
Jonathan Walton: Right. This person did not build it for you.
Sy Hoekstra: Yeah, exactly. So it’s the… and there are a million different ways that you can think about that, right? Like so many disabled people have to, are literally forced by government policies to remain in poverty because there's only so much SSDI money that you can store up in your savings account before you have too much money and they disqualify you from getting the benefits anymore. Like there's all kinds of stuff like that where you, the disability is created by this society, not by your body. So that's not to deny that I can't see. Obviously I can't see. What it is, what you're trying to do is focus on what is caused by a lack of vision versus what is caused by a society that is not built for a blind person.
Jonathan Walton: That's a super helpful distinction. Can you talk a little bit about, how can white disabled people make it too ideological or take things too far?
Sy Hoekstra: Yeah. So, okay, so this, Jonathan's not asking that question out of nowhere, this is in the outline we created. It's interesting though. So some people can actually do, I mean, especially like in the West, especially among white disability advocates, it can be taken kind of a little bit too far, made a little bit too abstract I think. Meaning, there's a lot of good, positive disability, community building and pride, and people who are like, “I love being disabled. I love being a part of this community. We have our own community, we have our own customs and traditions and art and media and whatever, and it's great, and I love it.
And I would not, if somebody offered me a pill tomorrow to be completely cured, I would not take it.” On top of that, offering me the pill in the first place is like as offensive as saying, “Hey Jonathan, I have a cure for all the racism you face. Here's a pill to turn you white.”
Jonathan Walton: Oh God [laughs].
Sy Hoekstra: Yeah. Right [laughs]. So the reason that I think that it can be taken like that's kind of an extreme and kind of comes from a place of privilege, and I have to emphasize that this is my view. There are people who would vehemently disagree with me on everything I'm about to say. So what that means is like people will advocate for things that I think are important. Like there are a lot of organizations out there that are not trying to do like good advocacy work to help actual living disabled people. What they're trying to do is find cures for various disability. So you're just pumping money into finding cures and not to helping people who actually have the disability.
And like it is, it is true. It is absolutely true that it is a very short road from there to eugenics. It is a very short road from thinking about disability from the medical model. Thinking about it from something to be cured or gotten rid of, to thinking like, how do we get rid of disabled people? Historically we've in the United States, in Nazi Germany, all over the place, we have done a ton of horrific things in the name of that way of thinking, in the name of the medical model slash eugenics. But my problem is that if you live in an affluent society, or you have a lot of privilege for one reason or another, saying that you are fine the way that you are and that you would never change can sort of become a way of flaunting privilege.
Because the fact of the matter is that not everybody in your own society or not everybody in the developing world has access to the same assisted technology that you do. Or can avail themselves of the same disability rights protections under the law that you have, or something like that. So I, this is a complicated thing for me to talk about because I absolutely understand where all of those people are coming from, but I am here when I'm saying this, taking some cues especially from like disabled people of color who I've read, who have kind of like pushed back a little bit on how much, on how readily white, disabled people are kind of willing to abstract the idea of having disability pride or the social model of disability to the point where real life circumstances of people who have multiple marginalizations are not really taken into account as much.
So that's I guess kind of the caveat that I will put on everything I said, right? But obviously, I'm a hundred percent for people saying, correcting the assumptions of many able-bodied people that like, disability equals brokenness and we just need to fix it, and we don't need to focus on how the world is not built for you and all that sort of thing. It can just be taken to I think a sort of extreme that I always kind of felt a little bit uncomfortable with, but I was, I've been able to articulate or think about it better, I think specifically from following the cues of disabled BIPOC.
Jonathan Walton: Yeah. Now, it sounds like what you're saying in a lot of ways is that disabled people are not a monolith. We can't make broad generalizations about disabled people because we had a conversation or listened to a podcast with a blind person on it being interviewed by a zealous person of color. Like it doesn't, just because I listened to a podcast or watched a documentary, doesn't give us the entire perspective on disability. So that's really helpful for you to point out and remind, and particularly for me it’s really helpful because I tend to do that. I want to be right in an argument, I want to make the best points and have the best conversations and appear like the great guy who's empathizing and understanding all the time.
And the reality is the more that I learn, the more I don't know, and the more questions I should have. So thanks for opening that up. Something else I'm wondering about is like, how have you experienced disability in the church? Particularly folks who want to pray for healing all the time. Let's be real. Now, we ain't got nothing against Pentecostals here. Sy you're married to a Pentecostal. [laughter] So can you like explain a little bit about what that is like, and how you've experienced that in the church?
Sy Hoekstra: So basically if you spend any time in communities of disabled people, you will find very quickly Christians are not a very well-liked group in a lot, for a couple reasons. But actually the main one, is that basically every disabled person has had the experience of Christians trying to heal them. Whether it's somebody coming up to you on the street, this has happened to me many times. I've had a woman one time just walk up to me and tell her that God told me that I was going to be able to see within the next six months. That was like four years ago [laughs]. People say stuff like that all the time, ask me to pray for healing.
And it leads to kind of suspicion too, like anytime anybody asks to pray for me, I'm kind of like, “Oh, here we go,” you know? Instead of it being like, “Oh great, someone wants to do the ministry of prayer in my life,” it's just sort of, it leads to apprehension. Anytime anybody asks to pray for me, especially if I don't know them, it is an anxiety-inducing experience. There are genuinely a ton of disabled people who are not Christians because of this. Like who have left the church, who were in the church who left it because they were objects for people, right? That you were objectified insofar as people wanted to see you healed.
People wanted to see you healed for the sake of affirming their understanding of how God works. Those are not the people that I'm going to count on to be by my side when I'm advocating for like, to make the world a more accessible place. Those are the people who want to get rid of disability. It's almost like turning God into like this cosmic doctor. It's like theologizing the medical model of disability. Like you are here to be cured, you're not here to be loved and supported.
Jonathan Walton: The idea that you exist as an object also feels like an externalization of how we see ourselves too. Right? Like we cannot accept ourselves, therefore we cannot accept you.
Sy Hoekstra: Yeah, and you can't accept yourselves based on standards of productivity or physical attractiveness or whatever. Like to all of those standards, disability is like one of the greatest offenses.
Jonathan Walton: Right. Like your presence would be offensive to God.
Sy Hoekstra: Yeah.
Jonathan Walton: Which is just monumentally false.
Sy Hoekstra: Yeah. And there are… if you're not, if you are someone who believes that God will heal disabilities if he is asked, then implicitly if you are a Christian and you're still a disabled person, there's something wrong with you. You don't have enough faith, you don't have enough devotion. You haven't spent enough time praying, you don't care enough about healing yourself. You're not devoted enough to God, you're sinning in some way, whatever. Which is effectively the question that the disciples asked Jesus in John chapter 9, “Who sinned, this man or his parents that he was born blind?” And Jesus says, “No, neither this man or his parents sinned, rather this happens so that the work of God could be displayed in his life.”
All that's going to happen here is that God's miraculous work is going to be displayed. In that particular instance, the man is healed. And the reason, by the way, the reason that I don't get mad at Jesus's healing ministry or his declarations that the kingdom coming is partially indicated by disabled people being healed, he says that to John the Baptist. The reason that I don't mind that so much, is because of what I said before, because he is alleviating people of difficulties they have in like extreme poverty and oppression for which I have absolutely no context, like no basis to understand. Like I'm not sitting there going, like, why isn’t this blind man proud enough of his blindness or whatever.
That's just like, I have no basis to ask those kinds of questions. I don't think when people are under kind of that, in circumstances that are that different than mine. So anyways, the framework of like a disabled person in church needs to be healed through prayer is just problematic in a whole bunch of different ways. So I mentioned that because that's one of the main ways that ableism shows up in church, and it's one, it's probably the primary way that almost any disabled person, Christian or not, is familiar with. But other things that I've had just from going to church, like I hear pastors all the time talking about passages in the Bible that have lots of implications for disabled people or talking about disabilities in the Bible and having just no context, no idea what they're talking about.
They don't know anything about the social model of disability. They don't know anything about the lives of people with disabilities. They don't know how we think or move or interact or anything. So it just, it becomes so drenched in ignorance that it's hard to listen to. Then there's just like a lot of everyday small things in the operation of the church that don't … Like, I cannot tell you how many times I've had to tell greeters at a church that I can't do anything with this printed bulletin that you're trying to hand to me [laughs]. Like, this is a piece of garbage you're trying to give me as far as I'm concerned.
Jonathan Walton: Even as you have a cane?
Sy Hoekstra: Oh, absolutely.
Jonathan Walton: Oh Lord have mercy, Jesus.
Sy Hoekstra: Yeah. All the time. And it's just like what … you're trying to welcome people and make them feel like they belong in a church and the moment they walk in you, or the moment I walk in and you're doing something to me that is immediately alienating because it makes it very clear that you just have no idea how my life works. Or like there are very, very few churches that have like ASL translation. So there aren't any deaf people in most churches. There are very few churches that really know how to properly care for, I don't know, autistic children or kids with Down’s Syndrome. So you don't get a lot of those families coming to those churches because they don't feel like, they literally don't feel like their children are safe there, you know?
So there are just so many things to think about in the way that the church operates, and that's, by the way, that was one of the reasons that we had Lamar Hardwick on the show. His book and his ministry and so much of the stuff that he does is helping churches to try and really do the kind of day-to-day functioning stuff that helps them be more welcoming places.
Jonathan Walton: So something, as you were talking about that passage in John that stood out to me was, when Jesus says, “God will be glorified through this man's life,” he may not just be talking about his healing. Because I think that because our version of Christianity is so focused on transformation and production, that it's almost like my life before following Jesus must have been terrible, when no, I experienced good and beautiful things before I decided to follow Jesus too. It wasn't like a total waste. I wasn't like a blob of … but thinking about that creates a much fuller picture of humanity interacting with Jesus across time, as opposed to just interacting with a human as an encounter. I got to think about a little bit.
Sy Hoekstra: Yeah. Absolutely. Everest is agreeing with a lot of the things that we're saying, it sounds like in the background. [laughs]
Jonathan Walton: Yeah. So, Sy, you've talked a lot about how your disability affects you, your life, your relationships. Can you talk a little bit about internalized ableism?
Sy Hoekstra: Yeah. So there are definitely some people who want to be able-bodied. I don't think that's how I personally ever took it in, but the way that I would take ableism in meaning the way that I would sort of emotionally react to it when I was younger, was to think that in order to overcome it, I have to be exceptional. Like there are a lot of disabled people who engage in effectively, respectability politics, like the equivalent of black respectability politics. Like I want to be a credit to my disability almost, you know? So I would just constantly think that I had to be exceptional in order to overcome everybody's expectations of me, which they always made abundantly clear.
Jonathan Walton: Right. You are the representative for all blind people, therefore you need to be Daredevil.
Sy Hoekstra: Well, actually, no, it wasn't so much that I … It was actually more selfish than that, honestly.
Jonathan Walton: Oh, okay.
Sy Hoekstra: It was like, they think little of me because of who I am, so I need to work extra hard to win their approval. It wasn't even anything about like me being a representative. It was just me getting the brunt of what they think about other blind people, which then what does that make you, what does that make me do? Trying to say “you” there again to separate myself from it. What does that make me do is, want to distance myself from other disabled people. I'm not like them. I'm one of the good ones, right? Like it's an entirely familiar dynamic to black people, right?
Jonathan Walton: sounds familiar. Right.
Sy Hoekstra: Yeah, unfortunately. So that made me, yeah, it made me distance myself from other disabled people. It made me want to win everyone's approval by being incredible at various things. Like when I was in school, I just wanted to get really good grades and make sure that everybody knew how smart I was. I want to be like really, really good at my job in whatever job I'm in. I want to be impressive all the time because that's how I combat everyone expecting less of me. There's this constant dynamic where if I fail, I think what's going to happen is people are going to attribute my failure to my being blind, like I just don't have the capacity to accomplish whatever I was supposed to accomplish.
So I want people to know, because it is better for people to think of you as capable of doing something, but you fail for some reason as opposed to them thinking of you as being utterly incapable of doing whatever it is. That's, I don’t know, for me, and I think for most people, but I think for me in particular, that's a like important distinction. So the way to do that is, you prove how capable you are all the time in everything you do. But the kind of more sinister way that that affects my relationship with God, there's a lot of pride bound up in that. You want to constantly be showing how good you are to separate yourself from other people who are like you, is pride.
It may be like, I don't know, more understandable pride than some other people's pride or whatever, but it’s still pride. So what that did to me spiritually is, I was not all that much of a fan of the work of Jesus to be perfectly frank. My whole life people would say Jesus was incarnated as a person and died for your sins and was resurrected and is building this kingdom or whatever it is. I knew instinctively and I did not articulate this for, until like a couple of years ago. The thing that I liked about Jesus's work was that like he lifted up people who were, who society considered less than. Because I think I recognize to some degree that that's me, right? Jesus is lifting me up.
He's saying that I don't count less than other people because of my disability. That I am valuable just like everybody else. But if everybody is valuable, then what, at least when it comes to like human value, no one's special. You know what I mean? Nobody is a stand out. Nobody can be a credit to their disability. Nobody can be exceptional. And I didn't like that. I still to this day have trouble resonating sometimes with the fact of forgiveness. The fact of Jesus's kingdom being for everyone regardless of anything, because I want to be exceptional, and he doesn't let me, which like I said, that would be healing.
That would help me accept who I am, accept my limitations, understand that God is going to lift me up despite what other people might think are my limitations, when they’re not really, and it would heal my relationship with other disabled people. It would heal my relationship with God, like letting me accept his gift and everything. And I just, I resisted instinctively because I want to be exceptional.
Jonathan Walton: Oh man. Sy, you’ve said a lot of things to me that are very helpful and also very practical. Like don't walk up on a blind person on the street and ask them if they need help. If they needed help they'd ask for it, right?
Sy Hoekstra: Yeah.
Jonathan Walton: Like there are levels of intersectionality that allow marginalized communities to empathize with one another, but also I shouldn't assume that I know everything about what it's like to be disabled because I'm a Black person. There are different levels of, I still need to practice the humility and ask questions and not make the generalizations about blind folks or disabled people that I hate that people make about me. So if there was something that you want to reiterate or something that you want to bring up for the first time just like, this is what would be really helpful for sighted people to see for, to do for folks who are visually impaired or have some type of blindness. Like what's just the thing you want us to know?
Sy Hoekstra: I think, you know what I'm going to do actually? I'm only on Twitter, I'm not on the other socials. What I'm going to do, is I'm going to make a list. There are lists of people on Twitter that you can follow, or maybe I'll find somebody else's. It'll be in the show notes, whatever it is. It'll just be a bunch of people who are good to follow and listen to and click on the links that they tweet and learn from them. Because what I think would be super helpful is if people spent more time listening to things like this. Just listening to people talking about their lives, talking about the political issues that they care about, talking about their relationships, about their faith, and just understanding more, right?
Like there's just such an incredible lack of awareness of knowledge. So I will have a list of people to just follow. And now my instinct is to give you like a whole syllabus. Obviously we already told you about Disability and the Church, the book by Lamar Hardwick. I'll have a link to that in the show notes too. I'll probably give you a link to The Disabled God by Nancy Eiesland as well, which is really good. We talked a little bit about that in the podcast with Dr. Hardwick. We obviously have that podcast that you can go back and listen to for just more conversation around these subjects. I just want people to learn more, for the purpose of making it easier to love people, right?
Like you cannot love people you don't understand, whose lives you're not familiar with. I don’t know, I think that would be huge and just make things a lot easier for a lot of people. I think it would be great if there were more people in churches speaking up about ways that the church is inaccessible, whether that's literally getting in the front door, getting into the sanctuary, having somewhere to sit. Whether that's people saying, “Everybody stand up for the reading of God's word,” just changing that to, “Stand, if you're able.” Whether that's considering getting an ASL translator and broadcasting it far and wide that you have one, because like I don’t know, there's just so many different things that you can do to make the body of Christ and the Word of God, more accessible to people on an everyday basis that we're just not doing.
Yeah. I want people to be familiar with my life and our lives as disabled people and familiar with how to advocate for us. I also want you to do what I have made an attempt to do and what we have tried to do at KTF Press, which is listen to marginalized people as much as possible. So the list that I'll send out will be probably primarily disabled women of color, but there will be lots of perspectives represented obviously. I just, I think it's important to listen to people who have the most to tell you about the things with which you are least familiar, and those are going to be the most marginalized people.
Jonathan Walton: So Sy, thank you so much for giving us just a window into the world of what your life is like. Thank you to our subscribers. Please make sure to rate and review. And I think this is an episode that you should share with a friend [Jonathan’s daughter Everest interrupts and says “bye”], get them to subscribe for the free month and then have a conversation about what it would look like to better serve the disabled community. [Everest makes noises in the background] Everest just blew you a kiss. [laughter] So special thanks to Jon Guerra who provided our amazing theme music, Jacqueline Tam for our wonderful podcast art and thanks to you and see you next month.
Sy Hoekstra: That's right. See you then. Thanks.
[The song “Citizens” by Jon Guerra fades in. Lyrics: “And that you’re building a city/ Where we arrive as immigrants/ And you call us citizens/ And you welcome us as children home/ Where we arrive as immigrants/ And you call us citizens/ And you welcome us as children home.” The song fades out.]
Jonathan Walton: She has these two beads and I didn't want to take them away from her because she would melt down, but I also don't want her to eat them. No, don't eat it. Give it to me. She's holding her hands out to me with both her fists clenched with a big smile on her face, because that's what I did to her earlier. I put it in one hand to see if she would like hit my fist and open it up, but she has two beads in both hands. She doesn't understand the game.
[laughter]
