#6 - Krysia Waldock and Mike Walker

Welcome to the Mad and Crip Theology Podcast, hosted by Miriam Spies and Amy Panton, which comes out of the Canadian Journal of Theology, Mental Health and Disability. We both live and work lands that have been homes and remain homes to the Mississaugas of the Credit, the Haudenosaunee, the Huron Wendat, the Neutral and the Ojibway/Chippewa peoples and other peoples who have cared for the land. We are grateful for the opportunity to live and work on this land and are mindful of the need to repair broken covenants.

On today’s episode of the Mad and Crip Theology podcast we talk to Krysia Waldock and Dr. Mike Walker. Krysia's creative piece "Doing Church During Covid-19: An Autistic Reflection on Online Church" illuminates an Autistic perspective on faith and church attendance during the Covid-19 pandemic. Autistic people may be stereotyped as less likely to be religious or have a belief system, yet they can have a belief system much in the same manner as a non-autistic person. It is also emerging that Autistic people are also disadvantaged in the current climate of a global pandemic. We discuss  Krysia's piece and also her work in the mad/crip communities more broadly.

Mike's poem "Love/Hate" describes his relationship to his body, rather fully…he loves his body because it is strong, slender, and sinewy. That said, he also experiences spastic cerebral palsy, scoliosis, and all that those conditions entail. Thus, often he hates his body, because he will walk into walls, nearly fall while moving towards a goal, lose his grip on an object. We discuss Bonhoeffer's assertion that the suffering God can help; that said, Mike sometimes wonders whether God sees his pains, and whether S/He really wants to alleviate them. We also talk about other work that Mike is doing in Ottawa.

This podcast is an opportunity to model how faith communities can engage in theological and spiritual conversations around madness and cripness. If you need a full transcript you can find videos on our Youtube channel and here is the link:  https://www.youtube.com/channel/UCRUW9z5hoqP_WK74hg3N8bQ 

We want to say that topics and conversations we are raising throughout our time together are often hard!  They are hard for mad and crip people ourselves and hard for our families and loved ones. So, do what you need to do to take care of yourselves, your bodies, minds, and hearts.

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Transcript

Welcome to the Mad and Crip Theology Podcast, hosted by Miriam Spies and Amy Panton, which comes out of the Canadian Journal of Theology, Mental Health and Disability. We both live and work lands that have been homes and remain homes to the Mississaugas of the Credit, the Haudenosaunee, the Huron Wendat, the Neutral; and the Ojibway/Chippewa peoples and other peoples who have cared for the land.. We are grateful for the opportunity to live and work on this land and are mindful of the need to repair broken covenants. This podcast is an opportunity to model how faith communities can engage in theological and spiritual conversations around madness and cripness. If you need a full transcript you can find videos on our Youtube channel. We want to say before we begin that topics and conversations we are raising throughout our time together are often hard! They are hard for mad and crip people ourselves and hard for our families and loved ones. So, do what you need to do to take care of yourselves, your bodies, minds, and hearts. And now, here is our episode.
 Welcome to today's podcast we're delighted to have Krysia Waldock and Mike Walker two of our amazing authors from our first edition. Krysia did a piece on online church during covid and Mike explored in a poem his relationship with his body, really great stuff. If you haven't read them yet please do check them out.

Now amy can help us get going. Thanks Mir yeah so we just want to say thank you so much for coming to today to both of you and Krysia even gave up her Friday night because she's in the UK and it is around seven o'clock at night there so thank you so much for that and I was hoping now we could ask you both to introduce yourselves I'm just gonna put into the chat the what we're hoping that you can tell everyone so just your name and your pronouns your work and your academic location and your connection to mental health and disability also how do we know you and if you could please give us a visual description of yourself like what you're wearing and what you look like that would be really great for accessibility so Krisha i'm gonna ask you to go first okay welcome. Okay so my name is Krisha and my pronouns are either she/her or they/them i'm currently based at the Tizzard Center which is an academic department at the University of Kent which is based in the southeast of the United Kingdom I'm an autistic phd candidate in the field of critical autism studies and sociology of religion so my research is looking at the social inclusion and belonging of autistic people in religious and humanist groups my connection to the journal is I basically saw an advert on facebook and thought I will write something and made a punt and had a go especially as I'm the only person in my department doing anything like what I'm doing i find connecting to people really really important so visual description of me i'm a person with dark red curly hair and pale white skin and brown eyes but they're covered by red tinted glasses with tortise shell frame and I have a grey jumper on. Thank you so much and welcome we're so glad you're here and Mike? Thanks Amy my full name is Michael Alexander Walker call myself Mike my pronouns are he his and him for work I work remotely for the Ontario College of Art and Design on a wonderful project called Our Doors are Open which i'm happy to expand on later I have a phd from the University of Toronto which is part of how I know the editors of the journal we are colleagues and we do a theology of disability my connection to mental health and disability is i am a person with spastic cerebral palsy who also experiences a certain amount of anxiety and depression and my connection to the journal is that another colleague back in probably like October said that I should send off one of my poems to to Amy and Miriam so I did so and I'm connected to the editors because again we are friends and colleagues from the university of toronto visual description of oneself I am a man with significant male pattern baldness the parts of my head that are not bare are covered in brown and gray hair I have a light beard I am currently wearing a very ratty old dress shirt it's blue and a white undershirt what do I look like technically I'm five nine but my spine's not straight so that's not an accurate measurement and I have uh hazel eyes in a very intense expression that should do it I hope. Yes thank you Mike that was awesome I'm sure everybody can imagine both of you now so thank you so much so I think Miriam is going to start us off with our first question for today. You both wrote pieces that wrestled with your particular bodies and minds sometimes loving your bodies and sometimes your bodies/minds being a source of pain so we wondered about if you could talk to us about living in and between those experiences and connected to that name a theologian or academic and disability studies who have influenced or continues to influence your own theology of the body/mind a big question but I think both of you can and give us so much food for that so Krysia how about you get us started? 

I'm now unmuted so I guess for me I don't solely locate my the pain I experienced within my body and my brain and my autistic being rather what I experienced is the consequence of systemic and ongoing marginalization and oppression for me as an autistic person within different settings and this does include the church and I guess this almost echoes the social model of disability which I think can be quite misunderstood sometimes with a kind of discount on what the fact that people do experience pain or where the pain the locus of it is and I guess in terms of my own experience of being at this kind of I'd say in juncture but that's quite a posture kind of in this position or intersection it's tiring and it's frustrating and I personally see all people and all humans as made in God's image leading to all being kind of of equal value so these systemic and the systemic barriers put in place so quite socially and humanly constructed and kind of against inclusion and equal value so two key thinkers that have shaped I guess my academic work and also inadvertently my theology as well neither are theologians one comes from social work and come one comes from sociology but they both do intertwine quite well with the theology I have are Dr. Mike Oliver and Dr. Damian Milton and so Mike Oliver was the pioneer of the social model of disability after obviously the papers were written up by UPIASC it went forward academically from Mike Oliver and kind of a brief overview of the social model of disability in a couple of sentences in case listeners or viewers aren't so sure it's where a way of viewing the world which is people are disabled by barriers in society not by their impairment or difference and I believe this kind of moves us away from a medical and pastoral model of disability where disabled and neurodivergent people are seen as objects of charity to be healed or petted on the head or kind of dealt with and sorted and that we have agency in ourselves and how we experience the world is real and valid and with and Dr. Damian Milton who is one of my colleagues at the University of Kent his double empathy problem theory is a key theory in autism critical autism studies and this is where people with very different experiences the world of the world so kind of autistic and non-autistic people find it really hard to empathize with each other and again it's this muscle mutual mismatch which kind of doesn't pin one person as broken or less or of less value and this echoes genesis 1:27 and doesn't put people as in society standards where they may be deviant or stigmatized whereas we're all of value and i guess my theology in that way is that all people are of equal value we are all in God's image

Thank you so much Krisha

Now Mike can you lead us down your thinking? Sure thanks Miriam yeah that was a way more denser and much more thorough answer than I think I was gonna give Krisha thank you and so jumping off part of what Krisha said the social model is definitely important to me so as as a person with spastic CP I experience small amounts of chronic pain and constant spatial disorientation that makes its way directly into the sonnet that I wrote for the journal and

how do I live in between experiences of pain? There really isn't any in between the pain because parts of it are constant and one of the things the ancients say and there are many so I won't cite them all but pain is a tool pain is like a sword helps you focus and that's that's what I find when I am experiencing pain it gives me something to focus on and not necessarily something to overcome because part of the social model is that we don't overcome stuff as people with disabilities we we engage in interdependence and to go back to what Krisha said we have a lot of our own agency we we live through our pain and we manage our pain and insofar as I can do that pain management successfully part of my experience of God is in the management of my pain and I try to turn parts of it outwards so that I can engage with other people because otherwise i would be full of self-pity and that would not work out very well and I feel like part of the sonnet was self-pitying the part about hating my body but we'll come back to that and theologians or academics who helped me to think through that initially I was gonna say Vanier but we know how people feel about Vanier these days I think if there were only one person I would call on Sharon Betcher who used to work an independent theologian used to work at the Vancouver School of Theology and she writes a post-colonial pneumatology of disability so a theology of the holy spirit where she talks about people of able body as normates right which is rather strong language and then people with disabilities making the world go on through through our experiences of pain and disengagement and disorientation and I think one of the things that weight training which is what the sonnet was about helps me do is make the world go on and also brings me into a state of relative peace with my somewhat fragmented body so that so that the first thing I feel in the morning is not simply sadness or anger or confusion but i can often also feel joy as kind of an undercurrent and the other thing that I find and i'll come back to this later is that relationships also help relationships are a crucial way of engaging with the world so that so that my model of disability is not solipsistic and singular but social to go back to what Krisha said is that a clear enough answer? That's super cool thank you so much Mike and Krisha. Mike I really love Sharon Betcher so she's had a huge impact on me too and same with Mike Oliver so I'm delighted we're having these conversations about being honest about places of pain and lament and being honest about places of joy and celebration that are not dichotomies in my life in any way. Right! So Amy over to you! Thank you and I really appreciate your both of your responses there thank you so much. Mike I was wondering if you could read your poem for us we would really love to hear it. Sure. I'll ask you a question about it after. Thank you okay you bet one second sure I have the link let me just call it up

okay so

So I can see the author note but not the the poem itself that's fascinating oh just click on on the side you'll see pdf or html okay whichever one is better for you you bet we'll get it going don't worry yeah i got it okay awesome.  Love/Hate a poem.

I love my body my thin arms can lift 100 pounds without much ache or strain my core is strong my feet are light and swift enough to lope along to joy's refrain I hate my body my back's not straight some days the only thing I feel is pain I hate my halting right leg and my gate will slow me as I walk on through the rain I live a paradox and feel unsound sharp love and hate are so conjoined in me that my emotions cast me to the ground I do not know how all these things can be I must seek stillness in my body's strife and wrestle from my paradox my life. Shall I read the note as well?

Yes please uh sure

So ironically i wrote this sonnet with a slightly different rhyme scheme in October of 2014 initially so a long time ago shortly after a day at the gym at U of T where I did like 40 chin-ups four sets of 10 repetitions at a 110 pound counterweight i think the sonnet describes my relationship to my body rather fully i love my body because it is relatively strong slender and sinewy i have more muscle than i did when i was 17 that's for sure that said i also experience spastic cerebral palsy and scoliosis and all that those conditions entail so i often hate my body because i will regularly walk into walls or nearly fall when i'm moving towards a goal or lose my grip on an object or as in this case simply be slowed down slightly as i go for a walk in the rain as Dietrich Bonhoeffer asserts the suffering God can help that said i sometimes wonder whether God sees my pain and whether he or she really wants to alleviate my pain and i've written about that as well

Thank you so much mike what a moving poem and you know as somebody who also has lives with chronic pain I share your tears I share your getting mad at God a lot of days and living in a medication fog a lot of the time so we are one in that in that spirit I think of having gone through a lot of pain so yeah I appreciate that yeah and you know I was reading being the nerd that i am i was reading over some of my notes from my exams the other day and a quote came up from Teresa of Avila and she said when i was sick i was closer to God and i think for me in my life that's been very true there's some connection for me between pain and needing God more so I might just put that out there for now i think that's accurate but we can come back to that when you ask me the question okay sure i'm i'm getting ahead of myself a little so Mike i was wondering can you tell us how how do you practice love for your body? Sure let me try so to really love my body is to engage in a process of activity buttressed and mediated by contemplation i mentioned Betcher in the question that Miriam asked us because Betcher says explicitly as you just indicated through Teresa actually illness can give back one's body to the world when I feel in pain or ill I have to slow down and you know stretch sometimes laboriously or drink a cup of tea or coffee or listen to birdsong rather than frantically writing emails for work or hustling to find other work or doing the things that regular able-bodied people might do on a given day when they have a regular amount of energy

illness and pain

they don't just point us towards God but they are a way for me to acknowledge my need for God and I know

even though God gave me the weird and lopsided body that I have that he wants me to express part of the vulnerability that all people are supposed to have for each other through that body i

i can feel God not just by moving through my pain but actually in my pain and Bonhoeffer is correct the suffering God actually does help and does come alongside me in the struggles that I experience with the pain in my legs and my lower back i practice love for my body most clearly sorry this is the short answer to your question by resting and by exercising so when i'm really in pain or really really tired like i was say the day before yesterday i know i have to rest but i also know that having done that i will have more of an opportunity to get up and use my free weights and resistance bands to do bicep curls or a shoulder press or do push-ups or just go walking around like to brentwood park which is right outside my house here in ottawa or to see my brother or something like that so it's about rest modulated by periods of activity and i think that's as true of the periods when i feel well as the periods when i feel ill and the thing that being in relationship with other people does for that is i know that when i go over to see my brother and his family for instance i on the one hand i probably shouldn't be all down on myself if i know i'm really tired or haven't had a great day on the other hand i know that i don't have to express all of those negative parts of myself and i can assess my own mood and step back from it

i know that all of those words made sense did they all make sense together? Definitely excellent we appreciate you sharing about everything that you do so thank you so much Mike. Of course

Yeah Mike I have seen have the same CP I have spastic CP so i can really relate with all your are your feelings or most of your feelings about pain and living in the body

and but i don't always experience pain as closeness to God

you know so we can talk about that later on or another time too. 

Krisha we want to turn tp your piece and we love that you use the term "edge walker"

and so Amy and i were thinking about theologies of liberation that continue to develop from edge walkers, from voices of the oppressed and the marginalized

so we wondered if your thinking has been shaped by this continuous theology and how much edge walkers bring about imagination possibilities and transformation

Just simple questions :-) 

It's a really good question Miriam I think a lot of my thinking both academically and non-academically has been influenced by liberation theologies although I didn't actually know about liberation theologies until I started my master's degree in 2016. and it was only then that i was lent some books by my then supervisor who's now at another university who was a fantastic support in giving me the idea to do a phd and really supporting me through the application process that she lent me i think some really fantastic books and i think she may have also lent me the book the Disabled God by Nancy Eiesland and i remember reading it and thinking how how have i not come across this before i guess i've always as i said had this kind of simple notion that everybody or everybody's equally in God's image but it was only really since i've kind of been doing this sort of research into autistic people in churches and how we are perceived and how we may or may not be included that is really only some of the bits are kind of boxed together and i guess also from my experience it's only i know it can be really kind of bitty it seems to be that people know these things who are in the know or have insider knowledge and they don't seem to be part of the mainstream i certainly never heard about any kind of liberation theology and disabled theology autistic theology queer theology anything like that in church and i too when i heard the name edge walker from a colleague and friend of mine that i thought wow there's people like me i'm not on my own and when i was sitting kind of having a look at the questions earlier i felt it linked quite nicely to intersectionality but almost the more intersections you sit at the more you can see and i think it's these people who can see what perhaps needs to happen certainly in terms of imagination and transformation i mean i certainly know in the UK we have groups who provide communities and to do conferences so we have one of the key groups that i'm included included with is the disability conference planning team at inclusive church and they've got some fantastic individuals and everything's co-produced and it's a real beacon of hope i find although they're in a different denomination than i come from and i think one of the real things that i've found from being with other edge walkers is the fact that we can rethink how we do church and just sometimes being and meeting and coming together without those other kind of social expectations and other bits and bobs that are physical or social barriers or if i'm having a really bad sensory day and i'm in burnout and i physically can't go anywhere there are still ways to kind of be church and i found those communities have really helped shaped my imagination and transformation and also other disabled and neurodivergent people i know as well even though it's still quite pocketed there's been it feels safe and it feels like a safe gathering space which i think is moving in itself and allows for people to undo or be in a space where they can be vulnerable which i think is really important

Yeah thanks it sounds like you're really doing some important work there yeah and

so this church that you're helping to imagine is that something that's going to be come more of a reality after the lockdown has passed or do you think this is something that like the project is something that's going to take a little bit more time for you to realize? I guess in terms of the project itself it existed for a good eight nine years before i got on board so it was there was conferences and gathering spaces pre-covid and obviously it shifted during covid and i think what i found really enlightening is how people have taken kind of technology and saying oh we can we can use this and that there's groups of people going but we could do this anyway even if we weren't all stuck at home because there's people who could really benefit and it's obviously not just things like zoom but in terms of just being able to gather almost in that very small group way of being church as well and i think you know in some ways lockdown has stripped some church groups back to the very bare bones meaning of when two two or more of us gather together you have church and i think in terms of it will there will be changes obviously as we come out of lockdown and there still will be gatherings but i think it's going to be constantly quite dynamic and i guess the challenge is for the kind of wider narrative of what we perceive as doing church normally to not this these things we're doing now to be seen as a real positive and bonus rather than just a short-term stop gap

Yeah i think that's that really helps me to understand it sounds like there's going to be some incredible stuff happening and coming out of the movement it's interesting i was thinking as you were talking i work for a couple of academic journals as my one of my side hustles and we were having a discussion a few months ago about liberation theology and one of my colleagues who is working on a phd in europe said his professors told him liberation theology is useless and also dead and i thought hmm that's interesting so one of the other more senior editors pushed back and said well i'm not sure that that's necessarily true and so there was this huge kerfuffle and so there might be some opportunities for people to show how theologies of liberation are still meaningful and you know like you mentioned Nancy Eiesland's book which was to me i had the same reaction when i first read it i was like how did i not know about this book i grew up with such shitty theology and if i would have read this book it honestly could have changed my life a lot sooner so yeah yeah i really hope that some of these conversations will continue and and i was thinking maybe like like our sort of generation of students who are now you know like doing phds or like finishing phds might be a generation who revives some of that theology and reminds people of its importance definitely i mean i have a colleague and peer who finished their phd a couple of years ago and they looked at disabled people's experiences in churches and reading their work was a real

freshness about it and it felt fantastic that this was finally getting the attention it deserved and it wasn't just seen as something we pat on the back back and popping a a drawer or a bookcase or that's seen as dead it's alive

yes very well said

So i wanted to give you an opportunity now to talk to each other about your work and also i wonder if you have any questions for one another that you might want to ask each other so Mike i might ask you to go first yeah that would be great thank you sure i i want to thank you for your uh for essay Krisha it was really interesting and i think that your perspective is very necessary i do the things that academics usually do i wrote down a number of your quotes that i liked so i have a slightly complicated relationship with church attendance i think that makes all of us like i was just late for the beginning of our zoom call in the same way i'm usually physically late to a church sanctuary i have been asked sometimes not to talk out of turn because i have a loud voice and can be rather outspoken and again just Amy mentions like shitty theology there's a lot of shitty theology especially surrounding physical and neurological or emotional experiences of disability and i think that one of the things we can do as a group of people as scholars with disabilities is figure out how to make those experiences more more normative and less stigmatized who defines the margins and why have they been defined so i have a colleague at U of T his name is Peter Hairsnape and he asks questions about borders all the time because he worked for christian peacemaker teams so same kind of question who who gets to say where the center is and why is it there and you talk about our neurology at the center of our political struggle i believe that's true i loved Eiesland's book when i read it 12 years ago it changed my life and it allowed me to realize that the way i perceived things was not just skewed and fucked up it was actually a valid perception of the world and i think people who are neurologically diverse like us have important things to say about the ways that society is and is not open to people who embody difference our neurology is not just personal perception or perspective it's a political statement and to go back to the second wave of feminism the political is personal and lastly you said sometimes doing the right thing is not safe i agree doing the right thing always requires risk and it requires being out on the edge at the margins with the other edge walkers with the other people who are always there so i really want to affirm your work and i think it's very important that you're able to do that from your own from your own context so thank you thank you too for your thoughts and i think i really liked your poem and i think i also have and had kind of a love-hate relationship with what i would call my autisticness perhaps it manifests a bit differently but i guess for many years i didn't have the words to know that i was autistic and to know what that meant so i was angry at God for being different weird not having friends and then when i was told i was autistic i was angry at him for being autistic and i i still can be when i face barriers in various settings and i think that's entwined of a lot of internalized shame and ableism that i kind of piled up throughout the years and shame at how the way i process kind of sensory information and communication stuff and when you were talking about Bonhoeffer's suffering God earlier it immediately twigged with me that God knows how i process and understand the world and he's bigger than the double empathy problem and i think that's why i see the double empathy problem as something that needs to be known in theological and church contexts because i don't think it's known enough in terms of and it's beyond autism it's the way that Damien has said it's applicable is beyond autistic people he obviously has done quite a bit of work in that field and i i guess that's just shows kind of makes me think that it's it's a kind of a human situated thing and not a me thing which i found i don't i find quite good i also found the word paradox in your piece really really strong and at the center of what was going on as well and

especially at the end it was particularly strong and that there can be this coexistence as well because i think sometimes people don't understand that you can be disabled be neurodivergent and experience pain shame chronic pain suffering but actually at the same time that you can like who you are yes i think some people don't quite understand that and certainly i like being autistic but i hate what i have to go through so yes yeah yeah thank you i appreciate that

I think one of the things that we're both hitting on is that the paradox at the center of our at least our social existence if not our bodily existence is a matter of hybridity and i know that Miriam and i have talked a bit about hybridity before i think

yeah the most important thing that we can do in churches like you were saying Krisha is talking about empathy i haven't read Dr Milton's work but the double empathy problem sounds very challenging and i think people with disabilities generally experience a lack of understanding and therefore a lack of empathy for many able-bodied people and one of the things that we can do as a group of scholars and as people of faith is show people in churches and in the theological academy that that God loves diversity in all of its complexity and that

what am i trying to say that God wants us to be able to empathize with each other in our diverse experiences even if that's not always possible in a social context yeah but even i think also that God knows that even if there is this kind of what Dr Damian Milton would call this mismatch of salience that having the understanding that people aren't all the same and being able to reflect on that shows kind of a understanding and awareness that you're not going to go and put people into inappropriate boxes sure yeah

wow thank you both so much it reminds both of you reminds me of what  Robert McGill calls coming out crip or coming out neurodivergent or coming out mad and the power is naming that and then being at home in our minds and bodies even even when other people aren't and even one even the moment when we aren't we return to that identity which is ultimately created by God and so we give thanks to God for both of you for all of us for this opening conversation around grief, around love around justice and disrupting the normative patterns of church so thank you both Amy do you want to say find your words yes we just want to thank both of you so much for coming today and it's funny when you were both talking i was thinking when i first started my phd i had one of the faculty at our school say to me Amy you know you're gonna you're gonna meet a lot of different people as you're going through your phd program and he said but i promise you you will eventually find your tribe i thought what's this guy talking about tribe okay and then i started going to disability stuff and i was like i think i have found my tribe and today i feel that both of you are part of my tribe all of us together are doing really important work and i just appreciate your your willingness to come and share and be so vulnerable here with us we really really appreciate it yeah so thank you thank you as well yeah thank you so much for having me and us this is great yeah