In this raw, honest, beautiful episode host, Lisa Sharon Harper, is joined by three guests, all of whom have intersections with the issue of disability. Shannon Dingle, Lisa Anderson, Amy Kenny and Lisa engage a rare kind of conversation–the kind that changes them in rare time, as we listen in. See the world through the eyes of these three disabled women. Be inspired and be changed forever.
References Linked
Can the Church View Disabled Bodies as Jesus’ Body? by Amy Kenny
The Coronavirus Exposes America’s Casual Ableism, by Shannon Dingle
A Disability History of the United States, by Kim Nielsen
Freedom Road Global Writers Group
Show Transcripts
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Lisa Sharon Harper: Coming to you from Washington, D.C. I am Lisa Sharon Harper, president of Freedom Road, a consulting group dedicated to shrinking the narrative gap. Welcome to the Freedom Road podcast.
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Lisa Sharon: Each month we bring together national faith leaders, advocates, and activists to have the kinds of conversations we normally have on the front lines. It is just that this time we have got microphones in our faces and you are listening in, and this month we welcome three guests. All three have had intersection with the issue of disability. Shannon Dingle, well-known and beloved writer is a contributor to USA Today, Teen Vogue and The Washington Post. Lisa Anderson is the vice president of Embodied Justice Leadership at Auburn Seminary where she founded the Sojourner Truth Leadership Circle. And finally, Amy Kenny recently had a byline in Sojourners, explaining that she is as Shakespeare professor who hates Hamlet [laughs] and she is also disabled and has no time for your ableism. So, I have asked these three amazing women to come talk with us on Freedom Road today about disability and its multiple intersections with other oppressions and issues of life. We would love to hear your thoughts. Please tweet to me @lisasharper or to Freedom Road, @freedomroadus. And keep sharing the podcast with your friends and networks. Our subscribership is growing. We want you to subscribe, by the way. Do not just tag in. Subscribe! So that it drops in to your box wherever you get your podcast, okay? Keep it coming.
Lisa Sharon: All right, so friends, I remember my very first interaction with the issue of disability as an adult. I had just given an early version of my talk on Shalom in that early conception. I had not yet learned about the Hebrew understanding of tough goodness, and extreme goodness, which is, you know, perfection, as we would understand it. So, I gave a talk, right, I gave my talk on Shalom, and I was still kind of thinking of that as existing inside the thing. In other words, the “thing” itself is perfect. So, I just preached that everything in creation was very good. And in God’s perfect world nobody is disabled. I said that. I actually said that in the talk. And a woman raised her hand afterwards and she said, “Are you saying that I will not be disabled in heaven?” And, you know, without batting an eye I said, “Yes,” and she pushed back she said, “But-but my ability is part of who I am. It is how God created me. How am I supposed to receive that?” And, so, I carried, I ruled that just that really, honestly, that got right under my skin and I carried that with me for years. And I went back to the drawing board.
Lisa Sharon: So, I want to ask you three amazing women, all of whom have intersection with the issue and experience of disability. How does your story intersect with that experience? I will start with Shannon. We will go down the line in terms of how I introduced you and just jump in after that, okay? So, Shannon?
Shannon Dingle: I am not sure where in my story I do not intersect with disability. I was born with speech impairments that I still actively work on not impacting with my speech when I am speaking or at least better understanding of my speech. It is that is part of who I am. I was in an abusive home growing up and sustained head injuries and physical injuries that still impact me today, and that are the primary way that disability manifests in my own body. And then, by birth and adoption, I have six kids. Among them, they have autism, cerebral palsy, ADHD, asthma, HIV, and a few other things in the mix. And I also live with chronic illnesses. I taught Special Ed. for the first few years that I was out of college and have my Masters of Education in Special Education, specifically [around] learning disabilities and autism.
Lisa Sharon: Mm-hmm.
Shannon: And for a long time I tried very hard to be an activist outside of the community – advocating for and teaching others about disability, but leaving my story out of it.
Lisa Sharon: Hmm.
Shannon: I knew that one of the ways ableism manifests is that disabled people are not always treated as full people.
Lisa Sharon: Hmm. Okay.
Shannon: And I felt like it was so important for people to understand disability and I did not want my disabilities to cause anyone to question what I was saying. That was my own internalized ableism and I have been much more open and active in sharing my own experiences over the past five to ten years.
Lisa Sharon: Mm-hmm.
Shannon: And then the one other area that is a really important intersection with disability is that I am a disabled parent, parenting disabled children. And there is a lot of complexity in both being a disabled parent and parenting disabled children, and [in] how I interact with both communities, other disabled people, and other parents who have disabled children.
Lisa Sharon: Wow. Whoo, Lordy Jesus. [laughs] Shannon. You know, Shannon, first of all, thank you for sharing that. And I also just want to say, “Wow, girl.” You know, I think one of the things that I realized when I was doing some reflection on all three of you is that you are literally – all three of you have some of the strongest voices I know. Period. Like you literally do. And I imagine that that strength comes from the amazing …it’s like you get a workout everyday, just living. [chuckles] You are strong. You are all three incredibly strong women and your story is a manifestation of that, Shannon. Thank you for sharing that. How about you, Lisa?
Lisa Anderson: Well, thank you first of all for having me on, at least. This is really a powerful – I do not even know how I am going to enter this, because if I am really honest I have struggled my whole life with even how I identify or do not identify as a disabled person.
Lisa Sharon: Yeah.
Lisa: When I was a kid, I was born with one of my legs was a lot shorter than the other. And when I was twelve, I had my right leg amputated below the knee.
Lisa Sharon: Hmm.
Lisa: And before that, though, I wore a shoe to build up my leg so that they were even, and leg braces, and so my disability was really obvious. And what I was very aware of as a child with that situation was having to navigate the space where people felt like my body was kind of porous. Like they could just ask me a question.
Lisa Sharon: Hmm.
Lisa: What is wrong with you? How did that happen to you? And so, there was always a sense that I was explaining who I was and how I walk to the world, literally. How I was walking through the world.
Lisa Sharon: Yeah.
Lisa: Last year I had my surgery. One of the things that happened that I did not expect [that] it was very traumatic at thirteen to have my leg amputated.
Lisa Sharon: Yeah.
Lisa: But it became an opportunity and I am putting that in quotes to hide because now what people could obviously see they could not see anymore. You know, I am wearing a long pants. I am walking through the world and suddenly I did not quote-unquote “look” like a person with a disability. And so, I got very, very good at performing, not-disability.
Lisa Sharon: Mm-hmm.
Lisa: And because I have a natural inclination to be athletic, I would just, you know, do everything: go to my fitness classes, just kind of present myself in the world as not that. And-kind of let myself be open when I felt like I could but sort of retreating back and forth. And I am telling the story for the first time ever actually that I will-
Lisa Sharon: Yeah.
Lisa: – retreating back and forth because I think there was a part of me that felt like, “Oh, my God. So, I am a black woman. I am a queer woman. I come from a working-class background.” How many more of the things, the identities do I have to carry? And do I have to carry this identity as disabled woman?
Lisa Sharon: Wow. Wow. My God, like no – I am sorry, I am just- I am kinda I am in that. I am feeling that. I am actually seriously in that because as a black woman, the blackness itself is a life-altering experience, and then you place on top of that a disability. Wow, you like add an actual calculation in your head.
Lisa: Yes, and so do I. And so, when do I want to carry this? And is this safe? Of course.
Lisa Sharon: Wow. [sigh]
Lisa: That is all a fiction, right?
Lisa Sharon: Right. Right. Right.
Lisa: But we can compartmentalize our bodies this way. And that just because I quote-unquote “decide” I am not, does not actually mean I am not. And it does not have anything to do with how I am perceived. And does not actually stop the, “So what is wrong with you? Why do you walk with a limp? What is going on in your body?” And I mean, I feel that as a black woman all the time they kind of looking at, the kind of gazing on my physicality or my way of moving through the world.
Lisa Sharon: Yeah.
Lisa: And so that is and remains a struggle and I think my biggest work as a person who is committed to social justice and who is committed to the fullness of black women’s lives is for me as a person who’s internalized some of that ableism, but also for all of us to be able to push past that place where we have to perform – normal that actually never does not exist.
Lisa Sharon: Yes. Oh, my God, exactly, and, let me just say I think, I did not… Can I ask you, did you write your title at Auburn’s The Embodied Justice Leadership, because that is so perfect.
Lisa: Well, I came up with that with our former-former colleague that you know, Rabbi Justice Baird.
Lisa Sharon: Yeah.
Lisa: We sat in an office one day and we just kind of thought about the work that I do at Auburn. Thought about the work I do with black women through Sojourner Truth Leadership Circle.
Lisa Sharon: Mm-hmm.
Lisa: All about the intersection between that work that is specifically centered on loving black women as a spiritual calling for our time and how that actually intersects with a broad understanding of social justice and transformation for all people. And we took kind of sat there and said, “This sounds like the right title for that.” [chuckles]
Lisa Sharon: [laughs] Well, I think the thing that just strikes me is the embodiment, right? And as a woman who has wrestled with the question of disability in your life and yet experienced it and we had to identify. I feel like it is a prophetic: Your own titles of prophetic call for you to live in your body, right? Like in the whole body and the whole assembly.
Lisa: Absolutely.
Lisa Sharon: Wow.
Lisa: And I think the thing that is powerful about the prophetic call of the title is the reality that were always in that struggle of becoming fully human and fully authentic. So, I actually think it is like a work of the spirit [in] that I am even saying these things in this context that I would not have ordinarily said because there is [and] there could be. I have decided not to feel that, but there could be a shame attached to admitting that I have gone through this place where I have had the privilege of saying “I am gonna hide from this identity,” or “I am gonna reveal this identity.” And I think the fact that I am saying that that is the reality that I have lived with is a call to say, “And we can do something different.” I can do something to be better that is beyond hiding and it moves into a fuller authenticity.
Lisa Sharon: Thank you. Wow. Oh, Lord of Jesus, like I am saying. Okay. So, Amy. Amy: I just met Amy recently, y’all, and let me just tell you she is a part of our global writers group that meets on Saturday mornings, and, you know, she showed up and I did not know until reading her byline and Sojourners that she is also a Shakespeare teacher. I am like, “Oh, my god, really?” That makes sense because her writing is amazing. Amazing. And so you need to go today and read that piece at Sojourners that she wrote, Amy Kenny [is the author] and we will link to it also in the show heads. But Amy, what is your life’s intersection with disability?
Amy Kenny: Thank you so much for saying that Lisa…
Lisa Sharon: So, true.
Amy: I am glad this is being recorded so I can just replay that to myself anytime I am feeling down that you think my writing is good. [chuckles]
Lisa Sharon: [chuckles] Oh, my gosh. Yes.
Amy: Yes, so I am disabled and my disability isolates between using various mobility devices. So, I often use a wheelchair or mobility scooter. Sometimes a cane, and then sometimes I walk unassisted. And, so, there is no set script or narrative that really fits my disability or really anyone’s. It is both visible and invisible, public and private. It exists in its liminal space where my disability looks like a muscle memory of another life when I am walking unassisted. And then when I am in my mobility scooter, I know kind of what it is like to move about the world without it. So, I have sort of this both-and experience. I really resonate with what Lisa said about people asking her “What is wrong with you?” continuously. That is something that happens a lot in a public space to people with disabilities. It is as though our bodies become public property and people feel as though they have the right to ask invasive questions about my medical history or often people will just randomly recommend remedies and treatments to me [chuckles] completely.
Lisa Sharon: Wow.
Amy: So, yeah, I have been recommended everything – as I am sure Shannon and Lisa have as well – from sleeping with a bar of soap to get out of my wheelchair.
Lisa Sharon: What?
Amy: -to yoga, to eating more avocado, I mean, you name it. I have had it. [laughs]
Lisa Sharon: Oh, my God. Wow.
Amy: And I think, you know, I think for the most part people are well intentioned, and they just lack the understanding and the experience with people with disabilities is. And that they picture my body as though it is a problem to fix that invites for people to say, “Here is a remedy that can cure you,” it is actually really problematic in terms of how we are thinking about disabled bodies in a public space.
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Lisa Sharon: These are our stories. You are listening to the Freedom Road podcast where we bring you stories from the front lines of the struggle for justice. [Background music playing]
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Lisa Sharon: We are living in the kinds of times that seed books, blogs, magazines, articles, and op-eds that move the world forward. Our words floating in your head, looking for a place to land. Do you need a safe space to write and share your work with other writers and receive feedback that helps to hone it, sharpen it, make it even better? Freedom Road is launching an international writing group online. Writers from across the globe will come together on Zoom, making space and writing in each other’s presence, but in our living rooms like good citizens do when we are social distancing. Then we’re going to share what God poured into the world through us. Your one-year membership can lock in your spot in this international writing community or you can pay month-to-month. Follow the link in the show notes on our website, freedomroad.us, to register today.
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Lisa Sharon: So, this is again for everybody: What do you think is the core spiritual lie that most people believe about differently-abled people? When I say “core spiritual lie,” let me explain that there is actually a context for that. [And] I am harkening back to is something that Gandhi actually explained and then [they] also used in the Civil Rights movement. To identify the lie, the spiritual lie, that most of society believes, including the oppressed themselves. And it is the lie that allows injustice to be upheld. It allows everybody to go along with injustice right in the room, but everybody thinking that is normal. So, what do you think is the core spiritual lie that most people are believing about differently-abled people? And how does that lie manifest in your like life daily?
Shannon: So, I want to jump in first on language before I am answering that.
Lisa Sharon: Yes.
Shannon: Differently-abled is a term that is almost exclusively used by abled people.
Lisa Sharon: Oh, my goodness, really?
Shannon: Yeah.
Lisa Sharon: I thought I was being all sensitive. [laughs] Oh, my gosh. Okay.
Shannon: Well, and I love…
Lisa Sharon: Teach me, please.
Shannon: Yeah, I would love that you brought it up because it allows us to have this real conversation.
Lisa Sharon: Yeah, that is right.
Shannon: I do not have different abilities that manifest. I do not have a cape, I cannot fly.
Lisa Sharon: [laughs].
Shannon: I cannot do all of these things.
Lisa Sharon: Wow, it is so good. Oh, I am so [crosstalks]
Lisa: My cape is in the bathroom. I take it out occasionally. [laughs]
Lisa Sharon: She is like, “I have a cape.”
[laughter]
Lisa Sharon: Go on. Go on, Lisa. Not-no, thanks, Shannon. That is really good. I am sorry.
Shannon: Yeah. Well, and that complexity they are also because most of us here in this conversation experienced the responses and realities of physical disabilities. My autistic son definitely would say he has different and extra abilities because his hearing is more sensitive and his ability to categorize and process information is quite different from mine.
Lisa Sharon: Yeah. Yeah.
Shannon: And, so, there are some times that there are different things that do kind of offer a different sort of ability or different sort of perspective. But differently-abled is often for me code that someone is very uncomfortable with the word ‘disabled’ itself and possibly with ‘disability’ as a whole.
Lisa Sharon: You know, what– Okay, so– Oh, my gosh, like you are saying that literally makes me examine it and I think you are right. I mean, of course, you are right, but I am realizing. Oh my God, you are totally right and I am seeing it in myself. I think that that language which I picked up, of course, we all pick it up from somewhere else, right?
Shannon: Mm-hmm.
Lisa Sharon: So I picked up this but what it does is it actually … centers a perspective of the world where ability is the thing like the ability to have ability is the thing as opposed to – because, you know, you feel the need to highlight the person’s abilities [as] differently-abled as opposed to the reality that you know homegirl is struggling. You know, she is struggling through the world and she has got stuff to get through. Does that make sense? Am I being insensitive? Please tell me.
Shannon: Having a disability by itself does not necessarily mean struggling. And I do not think that I struggle as much as people assume that I do because this is my normal. Disability is often seen as an abnormal part of humanity. And-
Lisa Sharon: Wow.
Shannon: -it is normal. It is something that we all experience it in different ways, whether that be through friends or family members or just this culture that tries to tell us that disability is not good or cannot be good.
Lisa Sharon: Wow.
Shannon: There are so many layers there. And so, learning to even interrogate the words we use.
Lisa Sharon: Yes.
Shannon: [An] assumption of suffering often people will write that someone suffers from cerebral palsy. My daughter Zoey does not suffer. [chuckles] There are difficulties and things and sometimes suffering that comes along with her disability, but that is not the first word anyone who knows Zoey would use to describe her. And so, it is just understanding the richness and the meaning of the words we use is influenced by an ableist culture.
Lisa Sharon: Okay, so, I am sorry. I just, forgive me but I really am processing this like in live time here and I am realizing this is a lot like my experience of being an African-American woman down in Cape May, New Jersey. I love my friends in Cape May. So, anybody listening from Cape May, God bless you. I love you. But there was an experience of people whispering when they said … the word ‘black’. [laughs]
Shannon: Yes.
Lisa Sharon: Like they would literally, right? Okay, so, okay, so I am starting to get there. Like they would … because they … did not know a lot of black people, and so they would say, you know, um, “Can you pick up that ‘black’ purse right there?” [laughs] Swear to God.
Lisa: Oh, my God.
Lisa Sharon: Like the word itself was like this thing that you did not really even acknowledge and I have had first time I had somebody actually say to me was down there and say, “I do not think of you as black.” Right? So, there is a normalization of what humanity – normal humanity looks like is not black. And so I think I am hearing you, Shannon, when you are saying there is a centering of abled bodies that our society has done and so anything that is not that is not normal and so, therefore, must be struggle.
Shannon: Yeah.
Lisa Sharon: It is just… Right, okay, so I am getting it. Okay-okay-okay.
Lisa: I wanted to jump in on that because I almost wanted to flip the question about what is the core spiritual lie that we tell about what it means to be in a body, to be a human body. Period.
Lisa Sharon: Ooh.
Lisa: And the- [crosstalk]
Lisa Sharon: [inaudible] Go on, Lisa.
Lisa: …the idea that bodies are, I mean, we have heard this that it is white, that it sees gender, that it is male, that it is able-bodied, however, we define that.
Lisa Sharon: Yeah.
Lisa: That it is Christian. That it is economically secure. All of those things are a bunch of assumptions about what [and] how we decide who is walking and being and moving through the world is legitimate and who is not. So there is like a hierarchy of being that gets created.
Lisa Sharon: Wow.
Lisa: So I would say that that is where that core spiritual lie works and it is for me it is very tied to race as well.
Lisa Sharon: Yes.
Lisa: If I think about how during slavery … there is that memory that I know in my body.
Lisa Sharon: Come on.
Lisa: What it must have been like for our people’s worth to be measured and for bodies to be measured according to their productivity. So that when we talk about disabled versus abled-bodied, it is happening within a framework. I am talking about how much productivity can you produce within the context of this structure that is built on producing for the economy-
Lisa Sharon: For the white economy.
Lisa: For the white economy. And in so far as you cannot produce for that supremacist economy, your worth is devalued. And so, ability and disability gets pitched as either good or bad depending on that kind of logic. And so, inside of that logic …that is why I love Shannon’s point about ableism.
Lisa Sharon: Yeah.
Lisa: Not ableism about, but able-bodied, because … when we pitched that it is like able-bodied, according to what standard. Able-bodied according to what I am able to do, according to whose needs are being met, struggling according to what? And I think all of those – back to this idea that the core lie is that the way that spirit, God, or even the realities of life. Some of us come upon disability through accident, disease, whatever it is. And this is actually a fact of life, like do I … who owes anybody? I do not owe anybody. I do not know how to say this exactly right.
Lisa Sharon: Go on. I think we … almost got you. [crosstalks]
Lisa: Nobody owed ability. It is not-
Lisa Sharon: Yeah.
Lisa: It is … that if I am saying that right if that makes sense.
Lisa Sharon: Yes. Yes.
Lisa: It is like health is not something that I owe the world. Being non-disabled is not something we owe the world.
Lisa Sharon: Or that God owes the world.
Lisa: Or the God. No, we owe to be fully human and to create spaces where all of us can flourish and in so far, we do not do that. I would say that we are failing to fulfill our call that God has placed on all of us and that goes beyond the space we were talking about ability or disability.
Lisa Sharon: Oh, my God.
Amy: I think that that idea of tying worth to productivity and contribution to society and health and wealth. All of that is suppressing the image of God in people with disabilities because it is saying that we do not have inherent worth, just because we are image-bearers.
Lisa Sharon: Yeah.
Amy: And we know that that is the course spiritual life, right? There is no hierarchy of image-bearers. Someone is not more or less bearing God’s image. We all are. And it takes all of us to reflect God to the world and the beautiful diversity of God’s creation. So, I think it is also been helpful for me to talk about disability in terms of the social construct instead of a medical phenomenon. The idea that bodily difference is not what makes someone disabled – it is that the world is centered on people who are able-bodied and then people who have disabilities face systemic barriers because the world is built around able-bodied, white people.
Lisa Sharon: Wow. Ooh, Lordy Jesus again. Jesus is all up in this conversation [laughs], he is. I mean, really you know, so here is… Let me ask you this: So, two things, one is to go back to what Shannon and Lisa were saying just a minute ago, that your conversation reminds me of how Aristotle wrote his treatise on interpretation, right? … It is on language. It is on the use of language. And he was trying to discern who is fully human in terms of language, like the use of language. So … it is striking to me how Aristotle’s worldview has permeated everything: our theology, the way that we have shaped our world … and the way that we have centered ableness in the way we shape the world, but also race as well, and gender. It is all mixed up. That is thing that just strikes me is that all of these are all intertwined. They are not actually siloed issues. They all come from the same source.
Lisa Sharon: And then the second thing, Amy, the thing that really strikes me about [what] you just said is that I think there is something in [it]. There was a question that I still have that I want to pose to all of you is, you know, when I went forward in that study of the biblical concept of Shalom and began to understand that tov m’od is really about the relationship between things. It is not saying that the things themselves were quote, “perfect” because the Greeks, hence, Aristotle – their project was to be perfect, to find the perfect thing. But that was not the Hebrew conception. The Hebrew conception was that perfection, if you will, lived between things, so it was relational. If that is true, then another part of what it means to be human on the first page of the Bible is that we are – all of us – divinely called by God to exercise dominion in the world. Now, that is not about productivity. That is about stewardship of the world. That is about leadership. That is about the ability to make decisions that impact the world. And I think that what is striking to me is that the dehumanization of disabled people makes us assume that disabled people have no ability to exercise stewardship of their own. That they are to be stewarded. They are not to actually be the ones who cultivate and make decisions that impact the world. What do you guys think of that?
Shannon: It is definitely true, spot on. We often in Christian circles consider disabled people as those to be ministered to rather than ministering with. We are objects in that sort of construct and the question that Plato and Aristotle and Descartes were getting at is, What is human? Descartes [was] known for the “I think, therefore I am,” but if I think differently, what does that mean? If I process things differently, as I do living with severe PTSD from my abuse, am I still whole? What is wholeness? What does it mean to be a good creation? And it becomes … so rooted in oppression and in going back to my origins, my ancestors were the oppressors in just about any instance you can think of. … My ancestors arrived in the 1600s. They owned slaves. They had a plantation and they were actively involved in the genocide of Indigenous people. And considering all of that and knowing that part of my story and then connecting it to how we think about disability in the church is so rich and sad. There are so many different layers. I want to share a quick passage from a Disability History of the United States by Kim Nielsen, which is a good entry-level [book]. It is dense, but … it is something that is quite accessible for anyone, even who is new to this whole concept of disability – [it’s] history, disability, justice, what it is to be disabled.
Lisa Sharon: We’ll link to it in the show notes too.
Shannon: Okay, great. So, here is the passage: “Indigenous scholars and activists, Dorothy Lonewolf Miller, Blackfeet and Jenny R. Joe, Navajo suggests that some Indigenous nations have defined what might be called disability in relational rather than bodily terms.”
Lisa Sharon: Well, there you go.
Shannon: Yeah. “In indigenous cultures, disability occurred when someone lacked or had weak community relationships. Though individuals might experience impairment, disability would come only if or when a person was removed from or was unable to participate in community reciprocity” [“The Full Affirmation of Disability Justice,” Sojourners].
Lisa Sharon: Wow! Oh, my gosh. That is … literally at the heart of Shalom …and it makes sense, right? Indigenous people all over the world, the Hebrews where people connected to the land and connected to God, just like all Indigenous people around the world. So, if that is the truth – wow, that needs to tell us something. That is … how God understands disability. It is when … we break the relationships. It is when we have an impairment in the way that we connect with the rest of community. Thank you, Shannon. Wow! That was good. Thank you.
Lisa: When Shannon was saying that what said made me think about right now and COVID-19. In the way in which I have heard from many disability activists about how the way that some folks have lived with their disabilities are actually ways of living and being that we can learn from now as we fight this pandemic. And so, then the idea of who we turn to for leadership shifts, it then thinks that what is the cause of disability … in this broken relationship. If you are imagining now, I was thinking of my scholar friend Mia Mingus, who is a disability activist, and she writes about the way that people … if our society has always said working from home options are not good, but there have been many disabled folks who … need to work from home, [then] we can actually put things in structures and place in our society that
can make that happen. But that can only happen when we look to the experience of disabled people who are making ways to live from home. Making ways to understand what sheltering in place means. Kind of different ways of being and moving through the world that are underground because we are out of relationship with those communities. But right now, if we turn to the to the leadership of disabled folks or actually saying that this is a space. These are communities. These are people that we need to be a relationship with in order to be whole and that our society is actually broken when we are not because there is learning and there is wisdom in all of our bodies from all of the spaces where we are.
Lisa Sharon: Okay, so I want to… [laughs] We are literally … Oh, my goodness. I have a decision to make so do we break here, or do we keep going, because what I think we need to go one level deeper before we break. So, I am making this … executive decision. We are going to keep going [laughs], because I want to take us even deeper. Can we go even deeper, y’all?
Shannon: Yeah, definitely.
Lisa Sharon: All right. So how do we think about disability and abortion? We had a conversation about abortion and reproductive justice just two months ago – two or three now in terms of when people are listening to this and it was the first time I had engaged like in a public-public space about this issue of abortion and we did not touch [this]. We did not really. Well, there was somebody who mentioned disability but it really was not about that. But I think that right now at this point in this conversation, we need to talk about this because … the thing … I am struck by when I think about it now is the reality that oftentimes abortions happen because parents fear the disability of their future child if there is going to be a disability. And so that is one of the intersections and … I know I am trying on in troubled waters. But I want to ask you what do you think of this? How do you think about this? Because I think we have to have the conversation in order for us to move forward as a nation.
Shannon: Yeah, definitely and you know, Lisa, that I have thoughts. [laughs]
Lisa Sharon: Yes. Yes.
Shannon: The reality is that disabled women are more likely to have abortions or be sterilized without their consent. Disabled women are more likely to have life and health reasons for needing abortion access and disabled fetuses are more likely to be aborted, even when their differences are not life-threatening or medically complex, but there is some really interesting research that shows that in a community that is more accepting of disability and with more community involvement with disability, rather than our previous habits of institutionalization and hiding away at home, that when disability is [then] seen as a normal part of what humanity is. Babies, fetuses that are diagnosed prenatally with a disability are less likely to be aborted because those parents can see a place for a disabled child in their community.
Lisa Sharon: Wow.
Shannon: And disabled people are often just excluded from this conversation as they are from reproduction-reproductive or sex education, because we are assumed to be asexual. And when there are very, very, very few instances in popular culture where there are sexual relationships or even just into intimate relationships … between a disabled person and anyone – we got close to that with the movie, The Shape of Water, because … there was a disabled woman who had sexual relationship with this fish-like creature – but that even shows us that it is not even someone human that was allowed. You know, if it is going to be sexual, it is got to be something that is so far “other.” That is the only way that we think about things. One of my dearest friends, Katie, has had her leg amputated because of childhood cancer, and she has literally been asked if she has half of vagina because–
Lisa Sharon: What?
Shannon: Yeah, because she has pretty much no residual limb in the leg that is amputated and this gets back to the whole conversation of people feeling like they have the right to know our stories. As a mom to disabled children, I am regularly teaching them that this is your story and your story is sacred, and you get to choose how and when and where it is told, because otherwise disability stories are so often used as political pawns, which regularly happens in abortion debates on all sides of the issue, and yet very rarely are disabled voices present in those conversations.
Lisa Sharon: Well, now, I have a feeling they will be after this. [laughs] Thank you so much. That is … wow. Can I ask, Lisa? Lisa, where does disability intersect with the call of women of color for reproductive justice? I heard some of the echoes of that call in what Shannon just explain to us.
Lisa: Yeah, I did too, especially around this question of consent and before we are forced sterilization and forced abortions. I think that that question of consent and the notion of bodily autonomy, which is not the same thing in my mind as individualistic Marlboro person. I am on my own in the universe and so how we occupy our bodies. But the integrity of our bodies to be able to name when, or if, and when not only that we have children, but that we are empowered to take care of the children that we do have. I mean, when I think about this … in terms of Black women’s history, I think about the fact that the reproductive justice conversation is complicated, not just around whether or not we are going to give birth, but whether or not there is a capacity to love and nurture and take care of the children that we have. Whether or not our sex and sexuality is seen as belonging to us and as centers of pleasure. And all of these things, I think, intersect with the question of ability and disability, because again as Shannon was saying, there is this notion of infantilizing or taking away the sense of autonomy of that women and women of color and disabled broke. All of that is kind of a mixture, and to actually be able to pull them all apart is much more difficult than we think. I am thinking of… Oh, my God, like you, my mind is going in a million directions about where those sections are both in literature and in our real lived experience.
Lisa: I am thinking about the character in the book, Beloved. Baby Suggs Holy, the character that enjoins the community to retreat into the clearing to remember that they are flesh. To remember that their bodies which were often broken by slavery which were often made disabled by slavery, including Baby Suggs. The character who had the twisted hip and so she would walk into the middle of the community with her twisted hip, which means her disabled body, and she would proclaim for herself and for the entire community that we as black people whose bodies have been reduced to the substance of our production are in fact beloved. That our bodies are worthy. That the children that we would birth or not birth are entitled or should be entitled to come into a world that is free and to a world where we can love them. And when that does not happen, that is where I think the conversation of reproductive justice comes in. How do we create the conditions for us to consent to bring our children into the world? To consent to not if that is … what we decide to do as black women. But to have all of that be within the context of our wholeness and wellness, I think that all of that is mixed up in the place of the question about disability and race.
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Lisa Sharon: On Freedom Road, from coast to coast and around the globe. This is the Freedom Road podcast.
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Lisa Sharon: Thinking CAP is a weekly podcast hosted by the Center for American Progress, Michele Jawando and Igor Volsky. In the current political moment, [when] we find ourselves in full of protests, anger, and activist momentum, Thinking CAP hopes to lay the groundwork for the bold progressive policy ideas we need to continue moving this movement and our country forward. You can find new episodes each Thursday on Apple podcasts, Soundcloud, and American progress.org or wherever you get your podcasts. Also find them on Twitter @thinkingcappod.
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Lisa Sharon: Amy, you recently published that article that I talked about earlier at Sojourners and you said in the article, “I have almost every form of privilege someone can have and I am still not considered fully human by ablest standards. Some of the worst ableism I have experienced has been inside the church.” And actually, Shannon mentioned this earlier as well. So, three things struck me about that piece that you wrote. One, that you wrote it at Freedom Roads Global Writers group. Hello. [laughs] That was awesome. So, we got to first taste of it there. Two, that you talk about not being seen as fully human and so that really echoes back to our previous conversation. But this last piece is what I want you to talk about right now is that you see it’s worst in the church. So, can you explain that? How is it worse than the church?
Amy: Absolutely. I think … that the Church pretends that they have a different standard and is often really hypocritical in doing so. So often the Church tries to create this kind of sacred and secular divide, where in the world creates these oppressions and sees people as less than. But in the Church you can come as you are, you can be accepted, etc. and I just have not found that to be true in my lived experience. … It often happens that someone in different church spaces tries to pray away my disability. So, I will, you know, go to a church using my wheelchair or walking with a cane and someone will immediately come up to me and say, “God told me to pray for you. I am supposed to pray, you know, that you would be made whole,” and there are just lots of assumptions there about what whole is, what it means to be not whole. And then I think also there is a real misreading of the Bible through ableist lens.
Lisa Sharon: Yeah.
Amy: So, the idea that Jesus’ healing ministry is about bodies and not about actually restoring people to their societies. The idea that healing and curing of the same thing, which they are – they are not. And then just a real lack of interrogation of some of the other passages in the Bible that seem to hold up disability. So, we know that God declares that he will build a kingdom based on the remnants of the lame and the blind. We know that Jesus retains those disabling scars from the cross as a victory after resurrection. We know that the poor, crippled, lame, and blind, those are … invited to the Great Banquet in Luke and that is usually read as eschatology. And there is even a passage in Daniel that talks about God’s throne having fiery wheels, and I like to picture my wheelchair kind of being reminiscent of God’s throne. And so, I think that where the Church has gone wrong is that they want to erase disability or they want to eradicate it. And they think that that is what healing is when actually that is Eugenics.
Lisa Sharon: Oh, Lord Jesus. Once again, Eugenics – you ended on Eugenics, girl. You did. You did that. Wow. That is you … I am sorry. I am just really taking that in. It is Eugenics when the church structures its life around those who are “the strongest, the fittest,” quote-unquote.
Amy: Right, and just as Shannon saying before, we cannot just minister to people with disabilities. We have to allow for them to flourish and lead and we need to learn from people with disabilities. There is a great deal that people with disabilities can teach people with able bodies about how to, you know, create and define worth not based on productivity. About how to rid themselves of this notion of success that we have here in America. About how God is not interested … in this hierarchy of oppression of … climbing on the backs of some of our brothers and sisters in order to gain wealth or prominence. And I think there is lots of different ways of reading the Bible as well that we can learn from people with disabilities.
Lisa Sharon: Thank you so much for breaking this down, and let me just say I am just going through my head, one of the thoughts going through my head right now is the reality that … I am thinking about the pastors that I know, the leaders that I know. The leaders inside the church like who are … ordained, and ordained by the church to actually lead the flag, right? I am thinking how many of these leaders that I know are people who outwardly struggle or… Forgive me for that language, but you know, who are disabled? There are not many and especially in the evangelical world, I think if I think of the ones that I know, most of them are probably in the mainline world because they have probably been dealing with this within themselves – that world view of themselves maybe a little longer. But within the evangelical world where I grew up in, my faith was formed, and really the paragon – the paragon of church leadership which is what everybody’s striving to be, [was] you are trying to be like the leader, is [it] the able-bodied white male? Is [it] Aristotle’s able-bodied white male?
Lisa: It is. It makes me also think that inside of this, God I really loved what Amy said, but it made me think about the fear that is inside that people: There is a fear about disability.
Lisa Sharon: Yeah.
Lisa: And so, when the person comes in and says, you know, Here I am, … I got the call to heal you or tell you how you can be made whole. I think it goes back to that thing about breaking relationships between us, because is there a fear underneath that if I can see you and figure out how you can be made whole, whatever that means – [a fear of] how the disability can be washed away, then I do not have to deal with the fact that everybody’s ability is a temporary situation.
Lisa Sharon: Hello.
Lisa: And so I can sort of put that over there and put that on those bodies. Similarly, getting back to that thing I was saying earlier about being reduced to our work in our productivity. The whole society actually pitches towards that way, but if you can put that on certain people’s bodies, if you could put that over there on them and we do not have to actually grapple with the fact that there may be some fear there. Like, what if my body? What if my mind? What if my cognitive ability does not function the way that quote-unquote “normal” folks are supposed to function. Then where will I be? And maybe you know, and so that is what I hear inside of a lot of this conversation.
Lisa Sharon: Me too. And can I just say that it feels like it is really a call to a circle, to community in a circle where we see each other as truly going back to the beginning of the conversation, is truly equally human. And where we are in community and it will require of those who are able to or more abled that they actually get over themselves. [laughs] Keep hurting me. Like there is a way that … I think as somebody who is more able-bodied, but honestly, with age becoming more disabled, the fear that is in me as I get older, as encountering the challenges in being able to engage with the rest of the community. The rest of the able-bodied community as more, and I know I see things that are shaped and designed for people with more able bodies. But then I am locked out of that. I am not able to do that. What would it look like if we as a community, as the church actually, structured our things, our spaces, our places for the community, not for some productivity goal or to do something, but rather to serve the community. That might make sense. Does that make sense?
Lisa: It makes sense to me. I am thinking of all the ways that folks in disability communities are doing it for ourselves and then opening it up to others. I am thinking about this website that I subscribe to called Decolonizing Fitness. And so, it has people of all different abilities and body types and shapes and everything who are the leaders of how we move in our bodies. I am thinking of that help people in yoga communities are actually moving away from – from yoga as a commodity to yoga as the spiritual practice it is, and then bringing in, there is a movement with amputee yoga folks. There [are] ways in which there are people who are doing work on the ground who are saying we are leaders in this and it creates a space that is more open. I was with Reverend angel Kyodo williams, our friend, over summer ,and one of their practitioners was doing that kind of yoga that was opening it up to all of our bodies and all of our abilities. And the leader who by outward appearances did not have any disabilities actually struggled all of her life with chronic pain. And so, she is having to navigate how she can move her body through the world, but people do not see that disability, but what is happening is that people are creating spaces and there is transformation. And I think churches have a lot to learn from movements like these that are grassroots and kind of underground, where folks are saying, “We are taking the initiative around how we are going to lead in our bodies, and not just for ourselves but for everyone, because we’re a part of the community.”
Lisa Sharon: So, what does repentance require of the church? What do you think? Is repentance is turning and walking another direction? That is all it really means. What is it? What would it look like for the church to walk in a direction that mended community?
Amy: I think the church should acknowledge that and repent for that it was wrong to fight to be excluded from the ADA, The Americans with Disabilities Act in 1990.
Lisa Sharon: Oh, my goodness.
Amy: That would be a first step to acknowledge – that that was actually wrong. … Shannon actually has a great article about this … about how churches at the time and private schools fought saying it was too cost-prohibitive, and that it was basically the government meddling in their freedoms. And basically, we received the message, we are not worth the cost. We do not actually – the church does not actually care if people with disabilities have access to church spaces. So, I think that would be the first step, and then it would be to move from inclusion to belonging. There is a big difference between saying, “Hey, you are welcome here at our church, but we still want to fix everything about your disability or we do not want to look at it or acknowledge it,” and actually giving people with disabilities the space to belong and the space to thrive.
Lisa Sharon: And grow and lead.
Amy: Yes.
Lisa Sharon: I love that. How about others?
Shannon: Some of the lack of disabled leadership that you were commenting on, Lisa, within churches particularly, evangelical churches, is because fighting against the ADA meant that Christian schools from early childhood and beyond have not been required to be accessible. So, if we think of the population of people who have gone to seminary – I have many friends who would like to go to seminary but have not been able to find a seminary that would actually accommodate their disabilities. And so, who leads and how we value leadership particularly in spaces where we value education? It all becomes complex … to have disabled leaders what needs to come first? Do we need to be trusting disabled people? I would say yes. Do we need to be opening up access to what it means to and what the prerequisites we consider for leadership? Yes. And being able to recognize that is such an important piece that I really think repentance from the church looks like and that absolute first step is seeing us as people. You know that then our realities are realities. And we have this tendency not as much now, but oh, it is still present to do what the disciples did in John 9:2, which is asked, “Why is this man disabled? Was it him or his parents who sinned?”
Lisa Sharon: Right.
Shannon: And that whole mentality drives a whole lot of what we do. We stop there and we do not move on to the next verse where Jesus talks about the work of God being manifested in disability and in this person. We also love … our healing stories. We want tidy bows on so many things. [background noise] I had dozens of surgeries on my knees and on my spine and in other ways to be able to tell a joke that I am Humpty Dumpty, you know, like “putting things back together again.” And the reality is we love, love, love the story of the men in the furnace in Daniel. Not because they end up in the furnace. That is not the thing that is lauded. It is that they leave the furnace not smelling of smoke.
Lisa Sharon: Well, now! Oh, preach. Go, preach.
Shannon: And my body is covered in scars. My body – Jesus’ hands were scarred.
Lisa Sharon: Yes.
Shannon: The reality of not smelling like smoke in [or] within the church tends to be being all better. But what is all better? I was born not all “better” according to ableist standards. And so being able to say, hey, we are fine with an open invitation to consider in full belonging those who live in the furnace. Those who are not going to be coming out this side of heaven and in heaven are not going to necessarily be manifesting the way that so many abled people think that we will be.
Lisa Sharon: Wow.
Shannon: And just being able to see that and to understand that I am not a project. My children are not projects for you to fix but rather people to belong and love and be loved and show love to others.
Lisa Sharon: And help to lead.
Shannon: Yes. Yes.
Lisa Sharon: Yes.
Shannon: An we will not be considered leaders if we are not considered full people.
Lisa Sharon: That is right.
Lisa: I would love to see like a ten-year or even a year-long project that hinges on … the notion of there is no hierarchy of image-bearers. I do not know who said that earlier, whether it was Shannon or Amy, but-
Lisa Sharon: Amy. Yeah.
Lisa: Yes, like what if there was actually … a year where the church took a year or a period of time and collectively really dug into “There is no hierarchy of image-bearers,” and had disabled folk at the table to create what manifesting that in our congregations and in our faith communities would actually look like, from who is in the pulpit. From whose voice is heard. From how we change those physical buildings that we have. To how we throw away the idea that we have that that are being together has to necessitate that we physically be in the same space. I mean, if one thing we are learning right now is through the use of our technology is that there are actually ways that we can move around how we can physically be together. To being together in spirit and then that opens up the space for more bodies to be able to be present who may not ever be able to be physically present in the space no matter how much we modify it. So, I would love, I am doing a project-oriented. Like what is the Year of Jubilee look like? What is the Year of There is No Hierarchy of Image-Bearers look like for the church? And to see that at this historical moment we have political activists who are out there and who are saying we can not, that we will not go back to normal in the face of this crisis. What is the new quote-unquote “normal” that actually has space for all of us to be recognized as fully human? And how do we hold our leaders, our communities, our institutions, and our governments accountable?
Lisa Sharon: And what does flourishing in our world and inside the church look like when it happens? What do you see when that happens?
Shannon: Honestly, I think it is hard for me to answer that question right now because our family and I have … really experienced some deep wounds with ableism in recent years. And now our church is showing up for us and loving us quite well in the aftermath of my husband’s death. And I am starting to trust more, but we had a pastor just a few years ago say that our family used more resources than any other family in the church, and if we wanted anything more he did not know what to say. And that still, along with other parts along the way and, of course, involving my very jumbled view of God right now, just in the midst of grieving. My husband dying at thirty-seven in such a weird way that he did. I do not know what flourishing looks like because I think that I am scared to even imagine it because I faced such disappointment in the church.
Lisa Sharon: Okay. Hmm. Okay. Thank you for that Shannon. I do not honestly, really have words. I feel like part of me wants to just come and hug you. Can I give you a hug, you know virtually?
Shannon: Yes.
Lisa Sharon: I want to give you a big hug virtually. To hold you tight and just say, “Please, forgive us,” on behalf of the abled-bodied-minded church. The church that centers the able-bodied and I see it in myself. Not just the church, but our whole world has operated according to the logics of white supremacy. And quite honestly that is not only about whiteness. It is about maleness. It is about able-bodiedness. It is about Christianess, as Lisa said earlier. And I think that I just see. I see it. I see our sin and…
Shannon: I do not think I knew until now how much I have been longing to hear words like that. And you know … you and I have had hard conversations before and I work really hard. It is not the healthiest thing but not to cry and I am weeping right now in realizing that I have been longing for an expression of repentance for an acknowledgment that forgiveness even needs to be on the table. And, so thank you for that, Lisa.
Lisa Sharon: I am crying too.
Lisa: Which Lisa?
Lisa Sharon: I know. [laughs] Lisa Anderson and I get into this all the time, actually.
Lisa: It is probably both of us.
Shannon: Tears are sacred.
Lisa Sharon: Yeah. Well, tears are flowing from my eyes right now.
Amy: I think often about how powerful it is that we worship a God who stands outside tombs and says, “Why are you crying?” … I think we have to … get rid of all of our emotion because we think that makes us strong but I think … God knows our tears and feels our wounds. And I think that … they are sacred.
Lisa Sharon: I think that the thing that strikes me about even just this interaction is that you know, I want to jump to the flourishing part. I want to jump to the vision. And I think there is a reality that the people perish without a vision. So, we need to have that vision, but at the same time is not that kind of the triumphalism of whiteness?
Lisa: Yeah.
Lisa Sharon: Right? Is not that kind of the triumphalism of “We will have victory,” and not really realizing the reality that the relationship is broken.
Lisa: That is right. Lisa, you know when I was imagining that year where we are of that Jubilee it does have to come from with inside of the space where the people have been wounded.
Lisa Sharon: Yeah.
Lisa: I also think that for me when I say, “the Church,” I have always thought of the church as much smaller than the institution. And when I say, “smaller,” I have always thought it is a remnant.
Lisa Sharon: Yeah. Yeah.
Lisa: That will acknowledge and say and ask for forgiveness. And then wait for the one who has been wounded or not to say to take the step in towards … because even an apology does not mean that without the action it does not mean that the person needs to accept that apology. There has to be a repair that is gradual, but the wounding that the church has done is so great that every act has to be inside of the acknowledgment. And not even the guarantee that the one who was wounded will say, “Okay, I will be back,” but I am inspired always by the alternative remnant spaces that have always existed people within disability community. That is why I named those odd decolonizing fitness places. These small pocket-
Lisa Sharon: So, awesome. Yeah.
Lisa: -these small pockets of spaces that are resistance, but that also are building spaces of joy and radical inclusion like if that one that says.
Lisa Sharon: The conversations leaders have on the road to justice. This is the Freedom Road podcast.
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Lisa Sharon: Thank you for joining us today. The Freedom Road podcast is recorded in Washington D.C. and this episode was engineered and edited by David Dalton of Sandberg Media. Freedom Road podcast is produced by Freedom Road LLC. We consult, coach, train, and design experiences that bring common understanding, common commitments, and lead to common action. You can find out more about our work at our website at freedomroad.us. Stay in the know by signing up for updates and make sure you subscribe to this podcast so you do not miss the next one. We promise we will not flood your inbox with all of our stuff. We will just let you know when stuff is coming your way. We invite you to listen again next month. New episodes drop around the first week of each month. Join the conversation on Freedom Road.
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Thank you all for this episode on disability and its intersection with everything. It was so meaningful and educational for me. I am so grateful to know the both the struggle and the strength of some people with disabilities. I appreciated the honesty and also the call to do better for them and with them. Thank you again!!
Hi there! Throughly enjoyed this podcast and listening to so many perspectives. This podcast was what I needed.
I had a question: where are the transcripts for our d/Deaf and h/Hard of Hearing folks? I couldn’t find any on the website.
Thank you for sharing. What touched me most is the discussion of the disabled being measured by whose standard? I help my single parent brother. He has extreme ADHD and dyslexia and ended up on the street with two children. He moved from TX to PA to be near my family so that we could help. I have been going through a spiritual “awakening” you could say by having him near and having to evaluate how I intend to perceive him, his children and what my role is or should be in supporting them. I’ve learned how selfish and self… Read more »