#4 - Laura MacGregor and Alex Jebson

*Content warning: suicide, grief, death of a child.

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 Dr. Laura Macgregor and Alex Jebson. Laura's piece in our most recent issue of the journal considers how the intellectualization of worship in many mainstream churches denies embodiment as a source of spiritual wisdom, and as a result, excludes the meaningful participation and leadership of people with intellectual disabilities. Drawing on personal experience as the mother of a child with profound intellectual disabilities, Laura explore how an intellectual lens of faith, as demonstrated by theologians such as Henri Nouwen and Hans Reinders, has colonized the embodied spiritual lives of people with intellectual disabilities.  

Alex's piece in the same issue of the journal wrestles with the topic of student suicides from the perspective of the student body at the University of Toronto, and examples of secular and Christian examinations of the suffering and potential avenues of hope are offered. Suffering for the student body is the result of external trauma, compounded by the disruption of a cultural narrative for young students, a lack of institutional acknowledgement, and little spiritual resources to draw from, risking further isolation and feelings of helplessness. Hope can be found in discerning justice for the deceased, restoring a sense of agency to the student body through activism and institutional reform. 
To check out their written work, head to our journal website: https://jps.library.utoronto.ca/index.php/cjtmhd/index 

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.

• Follow us on Facebook
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• Check out Mad and Crip Theology Press 

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 on 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 crippness. If you need
a full transport you can find our 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 the fourth episode of the Mad and
Crip Theology Podcast! It is so nice to be

here with you all again and today we have
Alex Jebson and Laura MacGregor joining us

Miriam and I are so happy to be able to talk
to both of you. What I'm going to ask both

of you to do is just introduce yourselves
and I'm going to put just in the chat here

because we're on Zoom um what we're hoping
you could let our listeners know so just your

name your pronouns your work or your academic
location wherever you might be finding yourself

right now your connection to mental health
or disability and then the connection to the

journal so how do we all know each other so
that would be great. And if you might add

a visual dispersion of yourself that would
be awesome, so how about we start with Alex?

All right! Thank you so much for having me
Miriam and Amy it's great to be a part of

this. So I am Alex Jebsen he/him, I am a candidate
for ordained ministry in the United Church

and I'm also an MDiv graduate from Emmanuel
College in Toronto I graduated in spring of

2020 and I'm currently doing my supervised
ministry education which is a fancy word for

an internship doing that at Blythe and Brussels
united churches in Huron county here in south

western Ontario.

In terms of connection to mental health and
disability I'm learning I'm still a student

I'm still learning how to be a good ally to
these communities my own connection to mental

health is I've diagnosed with generalized
anxiety disorder in my university career so

that's the mental health perspective that
I bring to my ministry in my daily life. Connection

to the journal here I was very lucky to be
in classes with Miriam and Amy both as colleagues

and as them being my TA's so I feel a little
bit like the small fry here but I'm very excited

to be here nonetheless so was that everything?
I think.. Just describe what you're wearing

(yes, a visual description)...how long your
hair is!

yeah um

it's - the pandemic hair is real! yeah if
the humidity goes on for two more days I'm

getting a perm

Yeah that's amazing. And Laura...can you tell
us who you are? Sure! First of all thank you

so much for inviting me to be part of this
conversation I'm really excited to be here

and looking forward to the chat I'm Laura
MacGregor my pronouns are she/her and I'm

an associate professional faculty at Martin
Luther University College which is part of

Wilfrid Laurier University in Waterloo Ontario.
My connection to disability feels long and

complicated my professional life as an occupational
therapist so i worked with people with disabilities

and then my second of three boys three sons
was born with significant physical and intellectual

disabilities and was fairly medically complicated
throughout his life so after being a professional

working with people with disabilities I became
a mother and a caregiver to a very complex

child and that really brought me to the disability
and theology world. My connection to the journal

- I've known I feel very fortunate I've known
Miriam for many many years she and I met at

Five Oaks family camp where she would beat
us all at cards!

I was introduced to Amy through Miriam and
when I learned about this journal I was so

excited it is such an important contribution
to the conversation and to the work in Canada

and I'm thrilled to be a small part of the
conversation in terms of a visual description:

imagine a middle-aged mother slash woman with
gray blonde hair that is also covid-length

so it's now permanently living in a ponytail
and I wear blue glasses and I'm wearing a

blue t-shirt thank you and I'm Miriam I am
here with covid-hair that eventually I'm gonna

shave it all off I think and I am wearing
a blue and white striped dress and purple

glasses

And I'm Amy and I also have covid hair in
a lot of like curly hair today because of

the humidity I don't really know what happened
I also have big nerd glasses on and I'm wearing

a David Bowie t-shirt so yes!

So we wanted to before we started today we
wanted to just give a little content warning

here because some of the conversations that
we're going to be getting into today are going

to be they're going to be real we're going
to be talking about suicide and also we'll

probably navigate some of the territory around
grief and also the death of children so we

just want you to to know that in advance and
we want you to take care of yourself as you're

listening

So this first question is directed to Laura's
work

With a long pre-amble about my work...

So I never saw myself pursuing PhD studies

never wanted to do it but when I started to
see myself as disabled as a disabled or crip,

queer woman

I realized that most of disability theology
was written by white able-bodied, able-minded

men promoting belonging almost over and above
with the same diversity and power imbalances.

Of course I am hugely indebted to their work
and I'm engaging their work in a critical

way that I know one day someone else will
engage my work in a similar way

Laura, how you named the colonization of stories
and the colonization of disabled bodies and

minds through the white male gaze. So my little
"tiny" question is how do we challenge the

message of belonging and inclusion that reclaims
the importance of disabled minds and bodies

like you have done real differently in your
work and recognize that there must be reversals

in how we understand and experience how we're
in churches.

That's a heavy one so just bite off as much
as you want!

Okay yeah tall order there Miriam thanks!
I think when I read that question when you

sent it to me in advance of today's conversation
my knee-jerk reaction was how do we respond

to voices that have dominated the conversation?
So as you point out often white male able-bodied

and intellectually able voices and i think
my first thought was the work you're doing

this journal in particular i think is contributing
a really important collection of voices to

the conversation because you're disrupting
who is part of the conversation so in addition

to the very traditional scholarly research
article you're asking people to reflect or

to speak to the lived experience or to bring
art or sermons or poetry that reflect the

lived experience and I have found that very
refreshing I know as a PhD student and now

as I'm navigating these first few years post-PhD
one of the things I really struggled with

was that the conversation particularly around
intellectual disability was dominated by not

only intellectual academics but hyper intellectual
academics and similarly worship was equally

dominated by this hyper intellectualism and
I know I spent a lot of time thinking about

that as a mother and as a mother of a child
with significant intellectual disabilities

particularly when it came to worship which
was what I've written about with this journal

is I spent time thinking about how my son
Matthew might have engaged worship and how

worship would speak to him or not as someone
who understood the word the world not with

ideas and words but with his body and so I
think the work you're doing where you're creating

space for people to talk about these these
things in a way that steps outside sometimes

of the particular very specific academic way
of discussing ideas is an extremely important

and disruptive way of approaching who gets
to talk about what in the conversations around

disability and worship and caregiving and
theology so really my my sort of first thought

when this question was posed was well exactly
what you're doing in this journal by intentionally

creating spaces for for new conversations.

Wow thank you and I want to ask a follow-up,
I want you to talk a bit about your piece

like I'm sure readers have read it - maybe
two or three times - but for readers who haven't

picked it up yet,

can you tell us about about how you used those
ideas in relation to worship and disruption

in your work. Yeah so the piece I wrote for
this journal really started from my own lived

experience my own reflections as Matthew's
mother and as trying to find about trying

to find a place for us in worship and in part
the fact that we left worship for many years

Matthew was nonverbal and really experienced
his spiritual life through his body and the

traditional worship and many mainstream Canadian
churches certainly the United Church where

I spend time was very intellectual in its
approach and so my article was beginning to

think through what would worship look like
if we spent a bit more time in our bodies?

It also critiqued some writers who were commenting
on intellectual disability and faith and in

particular suggesting that people with intellectual
disabilities experienced a more passive relationship

with God and I really took exception to that
I did not believe my son simply passively

received

passively experienced a relationship with
God i believed he had an active role in it

and just because he couldn't describe it in
words or it wasn't a relationship that was

captured in ideas didn't make it any less
valuable or any less powerful or any less

active but yet I comment on the fact that
that some scholars would suggest that it was

a more "passive" relationship so I was trying
to come at it from two angles thinking about

critiquing some of these arguments that suggested
that people with intellectual disabilities

were passive recipients of a relationship
with God and didn't actively engage in it

and then also trying to think through through
sort of this lens of my son's experience that

I believed I had access to as his mother what
what would an embodied relationship with God

look like? And Matthew possibly experienced
that and then more importantly how could we

all experience that and how could we learn
from the wisdom and leadership of my son and

people with intellectual disabilities and
rather than suggesting their faith was childish

and passive step back and say well maybe all
of us would benefit from a more embodied relationship

with a divine or a more holistic relationship
with God and trying to think through that

so the article is an opportunity for me to
play with those ideas. Amazing thank you!

Thanks so much Laura. Alex I'm going to ask
you a question now about your paper so I'm

wondering if you could just give our listeners
a little bit of a summary of the paper if

they haven't had a chance to read it yet and
maybe you could also just let our listeners

know about the class that you were in when
you wrote it think that might be interesting

for them.

Thanks Amy so yeah this paper was originally
one that I wrote for a class entitled Suffering

and Hope which I took in my final year at
Emmanuel and it was a course based around

suffering and hope looking through different
religious lenses and social science lens around

how people experience suffering and grief
and where meaning and hope is found in the

midst of that and so this paper here kind
of the focus was taking two different lens

and applying it to a pastoral situation around
suffering so the topic that I that I took

on was student suicides that's particularly
at the University of Toronto which Emmanuel

College is a part of. What really sparked
it was an incident in January 2019 when there

was a suicide on campus and me and another
seminarian happened to be in the building

when the chaplain at that college was trying
to set up a space and a place for grieving

and discerning um and so being asked to be
a non-anxious presence that evening kind of

sparked this paper. The approaches that I
took were a Christian approach as a as a as

a student minister as well as more of a secular
social sciences approach because that might

be language that many university students
would be a bit more familiar with and it's

more of a general survey about some different
aspects of suffering and where the kernels

of hope might be so for the uh secular portion
of its looking at the sources of suffering

and external trauma of you know severed relationship
and disruption of the norm of progress kind

of that "gone too soon" mentality and particularly
a perceived lack of agency when compared to

an institutional response there was quite
a lot of uproar for many months between the

student body and the University of Toronto
governance around their handling the suicides

that had taken place that year. Christian
suffering - that lens was more focused on

you know worries about isolation from community
I played around a bit with Kenneth Pargament's

concept of "small gods" where the faith that
the faith upbringing that some university

students might have brought to them university
it might not necessarily be fleshed out enough

or deep enough to handle this type of crisis
as well as a divine struggle of sorts and

potential worries about theological conflict
with... with some people not necessarily sharing

the same ideas of Christian suffering. Where
I delved into the kernels of hope was around

agency and justice-seeking and validation
of being able to use our words and use a collective

narrative of sorts to go through a process
of meaning discerning where there's

yeah we're just being able to acknowledge
what has happened and being able to have resources

to kind of put towards what the experiences
are it's it's probably one of the most fundamental

healing things in itself in this type of situation.
The last part of the article I focused more

on exploring how Christian liturgy might be
able to play into this healing process because

this paper was written in the spring of 2020
I didn't I couldn't quite write a whole grief

liturgy from scratch because the world was
kind of dealing with other things at the time

(!) but what I drew from was a Longest Night
service which is found in many traditions

within the Christian stream around grief and
lament and drawing from scriptural resources

drawing from embodied actions of laying our
grief down and collecting our grief together

and yeah so it's it's just generally a very
basic survey but something that's I've been

exploring more deeply as I've been going into
congregational ministry and hope to draw from

more and more as time goes on. Thanks, Alex
yeah it was it's such a timely paper very

very timely we're so happy that we could include
it for our readers! So I want to ask you a

little bit about the scriptures that you decided
to incorporate into the paper so you said

that... sorry would you be able to talk about
what drew you to the scriptures that you incorporated

in relation to the experience of a community
bearing witness to suicides? So Miriam and

I were really interested in... given the entire
Bible and how big it is, why did you choose

the scriptures that you chose?

Yeah there's there's a lot to pick from isn't
there? Yes!

I think the when I was looking for scriptural
resources the first thing I was looking for

is where are the cries of grief and pain where
is the where is kind of that guttural initial

reaction? And for that I found that in the
book of Lamentations which pretty much every

time I brought up the book of Lamentations
people go "huh?" like they've just never heard

of it and yet lamenting particularly the book
of Lamentations is such a deep rich part of

our religious tradition. I mean even just
the first (I can't think of the) Lamentations

3: "the thought of my affliction and my homelessness
is wormwood and gall" like very heavy language

very like gets right to the point and there's
some agency in being able to express that

language and or if you're feeling that you
don't have the words there are words I don't

say provided for you but to inspire you to
express your own grief and concerns over it.

The other thing that I really appreciate about
the book of Lamentations is that it does provide

the words of hope in there but it isn't a
clear trajectory. Lamentations only about

four or five chapters long but each chapter
begins with the lament and then goes into

the petition and then it has those kernels
of hope "but this I call to mind and therefore

I have hope the steadfast love of the lord
never ceases God's mercies never come to an

end" but then we go back into the lament then
we go back into the emotions because and from

a different perspective each time whether
it's lamenting as an individual as a community

as an entire nation it's it provides a bit
of that repetitive or cyclical nature of time

that i think we'll talk about a little bit
later. The other passage that I can think

of right now that I really dwelled on for
a bit was the passage coming from the Gospel

of John with the death of Lazarus and Jesus
going to visit Mary and Martha Lazarus's sisters.

A couple things that I found related to the
experience of the students suicides and where

the hope might be where the kernels of hope
might be is you know Jesus wept the shortest

verse in the bible one of the most impactful
one of the thing one of the verses that mold

shapes my pastoral ministry a God who is,
who abides with us, who laments and feels

with us and bears witness to a community there's...this
isn't happening in isolation people are over

at the house people are going through the
rituals and the meaning discerning of this.

The other thing that really spoke to me was
Martha telling Jesus off in this passage "if

you had been here my brother would not have
died" there was that little word of agency

there that little bit of justice-seeking and
meaning discerning that I found in the student

body's response to the institution's arguable
lack of response that being able to name the

injustice for what it is, name the worry for
what it is, the hopes in the past is there

a little bit later there is some resolution
there but the agency and the steadfastness

of God during the time of grief and that kind
of I think permeates through most of the most

of the scripture that I that I use for this
paper.

Thank you so much Alex.

I think Miriam has our next question. Yeah
yeah thank you Alex and thank you for talking

about the depths of scripture and the gradual

response to grief which brings us to where
grief happens. Grief happens in our bodies

that look different depending on culture or
personality but it always happens in our body

and I believe in God's body.

So that leads us to our next heavy but important
questions in the pieces both of you shared

grief and lament were woven through your words

An author I enjoy, she wrote an essay in Disability
Visibility edited by Alice Wong and she says

how crip time is similar to...part of crip
time is "grief time".So I will invite Amy

to read those words.

In "Arranging Grief Sacred Time and the Body
in 19th Century America" Dana Luciano traces

how grief time emerged with modernity as a
temporal and effective state juxtaposed to

progressive mechanical time she writes that
quote grief was aligned with a sensibility

that sought to provide time with a human dimension
one that would be collective rather than productive

repetitive rather than linear reflective rather
than forward moving unquote. This sounds very

much like the notion of criptime that Alison
and Margaret were talking about but disability

scholars like Allison Margaret and me tend
to celebrate this idea of criptime to relish

its non-linear flexibility to explore its
power and its possibility. What would it mean

for us also to do what queer scholar Heather
Love calls "feeling backward" for us to hold

on to that celebration that new way of being
and yet also allow ourselves to feel the pain

of criptime - it's melancholy it's brokenness?
Thank you Amy. So I will invite Laura to speak

first and our question is

so through your theological lens as a mother
where is God in crip-grief time? Or... make

it simple in your mind sorry my friend! you're
awesome you can do this! Wow you don't hold

back do you Miriam? Thank you for that question.
Yeah where is God in criptime? I think...thinking

through this question and I was grateful to
get hints of it before today, it's interesting

you know you talk about grief time and you
talk about crip time and I think in a lot

of the work and writing I've done in recent
years I've been thinking about it as chaos...this

idea of that the world expects us to move
through our own personal narratives in this

linear organized way and talk about it as
criptime it's not a word I would have used

but it made sense to me where it's it's circular
and it's non-linear and it's flexible and

it it doesn't follow the narrative trajectory
that we often expect in our day-to-day lives

and that our Western world expects and I have
spent a lot of time thinking and talking and

writing about chaos because within my caregiver
experience often caregiving theologically

is described as a very spiritually transformative
moment and I don't want to suggest that there

weren't moments that weren't spiritually transformative
but a whole lot of it was just chaos

And so for me your description of criptime
or grief time really to me felt like chaos

and then where is God in that where is God
in the chaos? Where is God in this experience?

and I think my answer and my learning through
much of the last 22 years has been God is

in the paradox God is in this experience that
is simultaneously chaotic and non-linear and

at times nonsensical that is also joyful and
redemptive if that makes sense. And I think

maybe it doesn't make sense and it's not supposed
to make sense because God is in the paradox

and the mystery so I think that's my best
attempt to answer this very very big question

that is to take a stab at it! That is a beautiful
answer and I would expect nothing less from

both of you! No pressure Alex but what were
you thinking about as you reflected on this

question: finding God?

Yeah my answer is going to be a lot less eloquent

I mean the thing that I mean this question
really made me check myself a little bit because

sometimes I lean quite a bit into my methodist
heritage in this idea of spiritual maturation

and sanctification where there is this there
is this projected growth or some type of progress

even if we don't quite clearly understand
that and in lived experience into the lived

experience that I've witnessed in others and
to the people who I'm serving now like that's

not how it appears most of the time it's not
necessarily the case. Yeah I think I touched

on it before the kind of cyclical nature of
how we experience the divine through our scriptures

and through our faith tradition how there's
not necessarily a linear path there in the

day to day the thing that I dwelled upon was
kind of the "already not yet" that we find

in the holy spirit and in the in-breaking
of the kingdom of God you know there's the

promise there's the potential there that's
always held for us and always offered and

yet

we're

and yet we still do experience the grief and
the lament and the and part of being who we

are part of being God's children and beloved
creatures I think the other thing that's from

the Christian lens that really lends itself
to this understanding of crip or grief time

is this idea of the collective narrative of
being grafted onto the body of Christ that's

the image that popped into my head where you're
bearing witness to and sharing with the with

the experiences of others and not necessarily
in a in a colonizing way and Laura I thank

you for offering that language and offering
that understanding of how we relate to one

another's spiritual journeys but in a way
that is that can promote some reflection and

empathy and compassion and being able to look
back on our own journey look forward into

our own journey with new insights every time
so yeah crip and grief time God's in there

in a way that's as convoluted as it seems
and more so.

Thank you so much to both of you that was
a that was a a tough one and one I remember

when we emailed you we said the question itself
was hurting our brain so we just thought maybe

he would both be able to shed some wisdom
so thank you for that. We wanted to just give

you both an opportunity to ask each other
questions or maybe make some comments to one

another about each other's work so Laura I
might invite you to to start if there's anything

you might want to ask Alex or discuss with
Alex about his piece?

Yeah I think my first thank you and thanks
for your article Alex I really enjoyed reading

it. I think right now I'll start with a comment
and your article in many ways was pastoral

which I was grateful for so what I haven't
shared yet is that you were writing this article

during a time when iIwas in the intensive
care unit with my son my son passed away two

weeks into the pandemic and one of the things
you talked about in your article which really

struck a chord with me was grief transformed
to advocacy and that one of the responses

to grief was anger and calling out of the
university and for me you know thinking through

a little bit of my journey after Matthew's
death and channeling some of my grief into

what I felt was advocacy so writing some of
this stuff around how do we how do we start

to make change around how disabled experiences
are included and welcomed in our faith community

so I was I just want to say how grateful I
was for that particular part of your article

because it really really spoke to me. I guess
one of the things I was curious about was

how as you're in the midst of supporting your
classmates and your fellow U of T students

in the midst of this overwhelming experience
and then you're trying to write about this

during covid and the first few weeks of the
world seeming to fall apart how did you navigate

this personally how did you attend your own
self-care and your own mental well-being as

you're spending all of this time trying to
both care for others but then also transform

it into advocacy?

Thank you Laura I appreciate the comment and
it's a very good question and thinking back

now to writing the article I'm wondering

just how much self-care was actually there
if or if it was just kind of written in panic

because that's I mean sometimes that's just
the mindset of the end of semester anyways

I do think that for myself there was self-care
in doing the research itself and seeking out

the resources there from a more pastoral and
professional standpoint just being able to

pinpoint where some of the resources were
gave me a sense of calm and relief compared

to being in the initial experience

being asked to dwell in scripture it's I it's
something that I mean lectio divina and those

sorts of dwelling in the word type of church
that's at the heart of my own my own spiritual

well-being and spiritual practices so it was
fortunately for me it was kind of built in

there as well I did

have support from the community around me
from the student body from the student body

at Emmanual and the pastoral resources there.
I'll also give credit to Philip the chaplain

at North York General Hospital when I was
writing this article I was also doing my third

year placement at North York doing student
chaplaincy and to his credit trying to be

a chaplain himself in a hospital at the outset
of covid at one of the hospitals where there

was the first outbreaks or first patients
being cared for there he was willing to take

the time with me and to help me discern through
this and stuff so yeah kind of in the process

being able to dwell in the faith narrative
and the stories of others and having those

pastoral resources built into university life
I think it was was very helpful for me to

in writing this article even if I didn't actively
seek out those supports as much as I could

have at that time I suppose.

Thanks, Alex and I wonder if you have any
questions or comments that you'd like to share

with Laura? Yes Laura again thank you so much
for this work and this article and being able

to offer your own grief and your own insight
into helping make us some better ministers

and some better theologians really. I think
the part that really struck me the most was

exploring embodiment in liturgy because I
read your article and then I went right back

to mine and looked at the liturgy that I had
at the end of my article and thinking oh we

need some more embodiment!

As much as you

yeah it's it was a bit of a wake-up call for
me for sure to be able to say okay there's

a lot of words here not so much ability to
embody kind of the movement the motion that

I was hoping to get through the service. So
Iguess my question for you would be in your

experience either in writing this article
and afterwards reflecting on the possibilities

or in your own experience participating in
worship with your son is there one or two

kind of embodiment practices or examples that
you can think of that really stand out as

something that's helped you and your son express
your active spirituality?

Yeah again great question I think one of my
first thoughts would be I can only speak to

my experience and my experience with Matthew
and so the experiences of other people are

going to be very different potentially so
in terms of bringing embodiment into worship

maybe just attend to the community you're
involved in right off the bat but I think

one of the things again as I sort of have
talked about one of the things that parenting

Matthew really brought me to reflect on is
how intellectual our faith is and and it was

only I so I stopped attending church for many
years because there was the sense that that

there was no place for us and there was no
place for Matthew I think more specifically

and this was really when he was now a teenager
and he had outgrown children's programs but

in the worship service he also really wasn't
able to engage and his spirituality wasn't

addressed and unfortunately then what would
happen is he would potentially vocalize and

while people will say it doesn't bother them
there's sometimes some implicit messages that

it does so we would leave and we would I think
what really started this is that we would

often spend our Sundays going for walks and
walks in the woods and so all of a sudden

nature became my church and the experience
of being in nature became deeply contemplative

and spiritual and Matthew and I could share
in that equally and our experiences might

be different and the way we engaged our faith
might have been different but it was something

we could both do and so I think I think bringing
people into worship who experience God and

experiencing their experience their faith
journeys differently I think just being open

to that disruption and how we do worship so
do we while we're listening to sermons so

some of us still may be engaging in idea do
we also have and paper in the sanctuary and

people are drawing what they're experiencing?
I'll share a story that brings me to that.

When I defended my dissertation it's open
so people could attend and a good friend of

mine was in the audience and other people
were taking notes she drew my sermon it was

amazing she drew she's an artist so so she
drew my dissertation not my sermon I apologize!

So is that a possibility? Do we have music
makers do we have open spaces where people

can move or sit why are we in pews? Like you
know I kind of want to be radically disruptive

because I think only by doing that are we
going to create the sort of space we need

in our worship services where diverse embodiment
and diverse ways of connecting with God will

be celebrated and honored and I'm only looking
at it through my son but what about people

with dementia what about people with hyperactivity
disorders what about people who have sensory

disruption? There's many ways of experiencing
the world and we don't do a very good job

of creating space to welcome them in our worship
services and I guess I love the fact that

covid is asking us to rethink how we worship
and can we continue along with these ideas

as we come out of covid? I would mourn if
we immediately go back to the way we always

worshipped and that's we walk in and we sit
in pews and we are quiet and we listen to

people and maybe we sing

could we do something differently and is covid
the turning point the pivot so that we do

things differently in a way that that new
body that that bodies and new embodiment are

part of worship I guess and you know it's
more of a reflective response I don't feel

I have any great answers other than be disruptive
be open look at who's not at worship and ask

why?

I am in awe of both of you you are brilliant
and I am, we are so blessed by your work and

I feel like we should end this Zoom call with
dance party and we need to do that

you can't put those on the podcast go check
out the youtube video right now and see some

amazing dance moves

Awesome! Keeping that dancing spirit going
- a dance that's mixed with hope and grief

and lament and possibility.

Amy and both know, we 
know our journal is part of expanding, we

hope, the conversation but we are very aware
that we may end up "preaching to the choir"

which can happen in theologies that focus
on different identities.

So I wonder, and no one has the right answer
to this, no one has the right answer to anything,

you all gave beautiful answers, but I'm wondering
how do we expand the conversation on disability

and mental health beyond those with insider
knowledge? And does that matter? And secondly,

Laura introduced us to this question earlier
but by naming how you practice self-care and

nurture your own faith while we do this work
in this life you know this work is part of

our life and our life is part of the work
so "preaching to the choir" and how do we

care for ourselves? And I invite Alex to start
us off.

Thank you Miriam. I mean preaching to the
choir? As someone who's usually in four or

five choirs in non-covid times sometimes the
choir is the one that needs to be preached

to!

Yeah when you sent this question ahead of
time and I was reflecting on it I kind of

looked at it from a congregational standpoint
because that's where I'm serving now and part

of it is just yeah using this covid time to
start the conversations or introduce it into

the conversations because these conversations
about what worship and faith life and outreach

will look like that conversation is already
going on so like I'm basically gonna just

take everything we've discussed here and tell
it to the worship committee and the outreach

committee to everyone else. I think

one other thing is you know being able to

encourage people to

I had a train of thought! It was there! Encourage
people to be able to relate to this or to

be able to have agency and have and have a
voice in this I'll say experience in congregational

ministry particularly older rural congregations
they don't necessarily have they haven't been

taught yet the language around these topics
and some ways that it's introduced to them

feels a little bit like okay we'll check off
that box and then move on like we had the

United Church the first week of May was mental
health day mental health week and like that's

obviously a great grounding place for a lot
of congregations but how do we move these

congregations past that week and pass the
Bell Let's Talk Day and stuff like that? So

it's just being able to incorporate these
conversations into other areas of our lives

of faith and you know supporting the choir
and supporting the outreach and stuff like

that too like it's making people aware of
journals like this one and aware, aware that

there's some preaching going on yeah so there's
not really an answer to that but just we need

to just have more conversations. Yeah that
is a really good answer. Laura do you want

to add?

Sure sorry i had to find my unmute button!
Yeah yes thanks Alex. I think I think we've

talked about it off and on over the last hour
but in terms of preaching to the choir stop

and take a moment and figure out who's not
singing or who isn't entering the building

at all to be part of the choir and then asking
why and then maybe leaving the building and

going out and finding them and making space
for their stories and their expertise. I think

we sometimes get really hung up on has knowledge
and who has expertise and we might be really

surprised where some wonderful contributions
to our faith journeys might begin if we just

expanded and disrupted who can be a leader
who can offer wisdom yeah so who's not singing

and why would be my answer and then in terms
of the self-care piece because I think that's

a really important one as well I know for
me as I've navigated some of my journey with

grief and with chaos because I really feel
that that has been a fairly dominant theme

in recent years for me trying to find some
small niche in terms of my own advocacy and

my own contribution to the conversation and
I know that that was a real struggle for me

after Matthew passed away I really wondered
if I belonged in the conversation anymore

because my entry point was always the mother
of a child with disabilities and the caregiver

and if I had lost that role did I belong in
the conversation anymore? And so figuring

out how I engage this conversation and how
I can contribute and how I can advocate and

how I can maybe make space for other women
telling stories of caregiving or of supporting

people with significant intellectual disabilities
for me that ended up being a huge part of

my self-care during fairly acute grief and
so again I was very grateful for Alex his

highlighting of that how that energy can emerge
from grief.

You certainly belong here.

Well we want to say thank you so much to both
of you for taking your time to come and talk

to us and also share your stories for our
listeners and we hope we'll be able to have

you back on again at some point. Miriam do
you have any closing thoughts that you want

to share? You're good? Okay well thank you
again so much to Laura and Alex thank you

both so much this has been wonderful! Yeah
thank you so much I've really enjoyed the

conversation and iIve enjoyed meeting you
Alex thank you. Same Laura.