Coalition-In-Progress: Found Poetry Through Phone Calls with People Labelled/With Intellectual Disability During the COVID-19 Pandemic

Note: Each of the authors of this paper made their own decision as to whether to use their full name, first name only, or initials.

Introduction

This found poetry offers snapshots of the ways in which a group of individuals labelled/with intellectual disabilities—some of whom identify as institutional survivors and some identifying as members of a younger generation of people who have not lived in institutions—and researcher/allies, keep in touch via phone calls during a global pandemic and its subsequent lockdowns in Toronto, Canada. This collaborative writing speaks to some of the complex affective ways that we, as a group, experience coalition-building-in-progress in ableist, high tech cultures and under lockdown.¹ While digital mediation was a viable coalition-building tool for some folks at the height of the COVID-19 pandemic, many people in our group live without access to digital worlds. For us, coalition-building is an ongoing process operating on a low-tech plane; we connect through telephone calls. The writing below is grouped through four themes that emerged in our found poetry writing process: attempts to simply stay in touch amid digital divides during especially isolating times, resistance to social abandonment, the uncanny experience of a sudden convergence of past and present necropolitical ableism, and an attempt to “co-construct different platforms of becoming.”². Taking this telephone-based dialogue as “evidence” of our lives in these times that might be, and make us, “recognizable” to one another,³ the poetry below chronicles the “DiStory” group’s coalition-in-progress efforts to keep in touch amid a crisis that threatens our together-ness and—for some more than others—our lives. 

Background 

Our group, called “DiStory” (a mash-up of the words “disability,” “story,” and “history”) took shape through a series of in-person meet-ups beginning in 2017. Participating in these gatherings were coresearchers labelled/with intellectual disabilities, non-labelled academic and community-based coresearchers and research assistants, and non-labelled arts facilitators.⁴ The focus was on learning from people labelled/with intellectual disabilities, including survivors of Ontario’s Regional Centres—large-scale provincial institutions, the last of which closed in 2009 but whose legacy of institutionalized care, discrimination, and ableism live on in the day-to-day experiences of both survivors and younger people labelled/with intellectual disabilities.⁵ This learning informed the collaborative determination of the purpose of our project: our collective creation of learning materials for post-secondary students. This decision reflected labelled coresearchers’ concerns that the day-to-day experiences, needs, and desires of people labelled/with intellectual disabilities remain largely invisible to most people. Combined with their worry that the closure of Ontario’s large-scale institutions was leading to a misguided belief that everything was now “OK,” and that discrimination, exclusion, and violence were no longer an issue for people labelled/with intellectual disabilities, they turned their sights towards the education of young people who they understood to have the power to shape a better future.

The COVID-19 pandemic called on us to reimagine our engagement with each other at the onset of regional lockdowns. Although it is widely understood that lockdowns are designed to keep us safe from contracting coronavirus, the abrupt halt to in-person gatherings (that once served as a lifeline for community engagement with the arts, activism, and other forms of organizing) felt alarmingly familiar to many labelled “DiStory” members: social restrictions starkly echoed the trauma of past experiences in institutionalization designed with eugenic thought to separate the populous from a perceived threat of disability. And, problematically, for many “DiStory” group members living without access to Internet or communication technologies such as computers, government-ordered social cut-offs that began in early 2020 and continue today cannot be supplemented through digital communications and remain isolating.

Process and Method

To resist isolation, we connect through telephone conversations. Though it may take a few tries, it is possible to reach “DiStory” members via phone calls if they are living alone or in group homes and other shared living spaces. For all “DiStory” members, maintaining our connections in conditions of (often extreme) isolation is essential. Both labelled and non-labelled coresearchers also desire to keep the project moving. Being less able to adapt previously planned project activities to this new way of working, together we turned our attention to the necessity of speaking out and against the invisibility of people labelled/with intellectual disabilities in pandemic planning and responses. 

At two different points in time (summer 2020 and fall 2021) Erin Kuri, a non-labelled coauthor, engaged each labelled coresearcher in audio-recorded conversations about their pandemic experiences, thoughts, worries, fears, and hopes; about what they have been doing individually and collectively; and about what they want non-labelled others—especially governments—to know, and consequently, to do. 

Two years and a great many phone calls later, coauthors of this paper (a mix of labelled and non-labelled coresearchers) scribed a series of found poems based on transcripts from these audio-recorded conversations. 

Working with all the transcripts, Kuri identified four emergent themes and created a document linking themes with transcript fragments reflective of each theme. Engaging then in numerous one-on-one telephone conversations with labelled co-authors, the meanings of and connections between fragments became clear. Non-labelled co-authors (Kuri, Fudge Schormans, Jones) collaborated to format each poem to reflect these meanings and connections, and the emotions within each, to reveal labelled coauthors’ lived experience,⁶ with Kuri sharing these constructions with labelled co-authors and inviting feedback via phone calls. Poems were reconstructed in response to feedback and shared once again. Through this process, fragments were care-fully assembled into the poems we share here. The poems then are the words of labelled group members. Jointly crafted by labelled and non-labelled coauthors, each poem is composed of the words of multiple labelled group members, with some degree of influence from non-labelled coauthors—an interlacing that draws out the affective contours of the conversations and the fragments. 

Our found poetry is influenced by postmodern feminist approaches to knowledge building that value intersectionality, collaborative egalitarian ways of working, ethics of care, and reflexive praxis. These values guided decisions made with respect to processes and outcomes of the research. Throughout the “Distory” project, Kuri had been engaged in regular communication with labelled coauthors, forming familiar working relationships built on respect, empathy, trust, reliability, and mutual passion towards social justice aims of the group. These relational ties were foundational to engaging in our found poetry research methodology, supporting labelled authors to feel more comfortable sharing their perspectives. 

While such relationships are necessary for this kind of collaborative work, our attunement and care to relational dynamics included recognition of how labelled authors may rely more on non-labelled authors. Labelled authors relied on the relationship with Kuri to be able to participate in the project. As well, they relied on non-labelled authors to represent their experiences and perspectives in a way that avoided pathologizing, victimizing, or infantilizing them. For non-labelled authors, a great deal of trust therefore is placed in their hands to prioritize the best interests of those most marginalized in the group. As a means of attuning to matters of dependency, Kuri engaged in practices of ongoing written and verbal informed consent. She paid particular attention to ensuring, as much as possible, that labelled group members understood that their relationship with her and their participation in the project would not be negatively impacted by any dissenting opinions they had about the writing or decisions they made with respect to inclusions or exclusions of any part of their transcript material. Overall, when Kuri shared the constructed poems with labelled authors, they articulated appreciation for how their words and ideas were included, some added suggestions, and all expressed pleasure with the final poems. 

We draw on found poetry as a form of research—as both representation and analysis, a means by which to learn and ethically re-present labelled co-authors’ experiences and thoughts.⁷ In consideration of their marginalization as “knowers,” we also understand found poetry research as pushing back, as resistance to their long-standing invisibility and silencing—an invisibility that has had significant consequences in terms of pandemic planning and responses.⁸ 

As a form of poetic inquiry, the research method of found poetry involves one or more researchers creating poetry in a collaborative and relational manner by selecting exact words, or phrases from materials such as interview transcripts, field notes, email discourse, texts or literature. These elements are then cut and pasted together, attending to spacing and line breaks, revealing the essence of labelled coauthors’ lived experience. Found poetry is an accessible way of imaginatively and intertextually reconstructing already-existing texts which, in our case, were phone call transcripts.⁹ Although the term “found” may imply lack of intention, accountability of researchers to those they collaborate with is central to interpretively transforming words and phrases located within the transcripts into poetic form. Through this transformative and collaborative process, lived experience of those most marginalized may be holistically represented with an aim to preserve and evoke affect. The emphasis on affect makes vicarious participation (showing instead of simply telling) accessible to a broad audience, thereby evoking empathy and creating potential for learning and positive change. Through collaborative back-and-forth exchanges, striking passages were selected and clustered into thematic groups. Essential words, phrases, pauses and silences from transcripts were then reconstructed into what Rosi Braidotti terms “fragments of meditation upon the sorrowful present” of the pandemic, upon its roots in the past, and worries—and hopes—for the future.¹⁰ The affective contours of these found poems based on phone conversations—that is, the emotive and political intensities colouring our chats that make us feel something¹¹—point to grief over the past, loss of agency, restrictive rules in group homes, the dynamics of protest, fear sparked by public health orders, and a mix of anxiety and hope about the future. Found poetry’s capacity for communicating these affects and expanding perspectives is always partial and in-progress because they are open to interpretation, and thereby also open to misinterpretation.¹² As Braidotti points out in her discussion of ethical inquiry amid crises, “Words, in so many ways, falter and fail.”¹³ Yet, these poems are a bricolage of our attempts to share a complex, sometimes un-articulable evidence of becoming coalition-in-progress in pandemic times. 

Reflection

Our poems explain why we think of ourselves as becoming coalition-in-progress. Early on in our work together, in-person pre-pandemic meetups supported coalition-building amongst “DiStory” group members, an emerging intergenerational coalition of individuals with and without the label of “intellectual disability,” and/or other disability labels or identifications. The enforced shift to virtual engagement at the onset of COVID-19 worked to exclude many “DiStory” members, interrupting project work of engagement, sharing, and learning—of becoming coalition.  Here, following Braidotti, we recognize that we are going through an “extraordinary period” of high-tech cognitive capitalism that contributes to pandemic conditions in the first place.¹⁴ The increased use of technology and digital interventions that supported many groups at the height of COVID-19’s impact was inaccessible to us. For some folks labelled/with intellectual disabilities, access to high-tech connectivity is impossible and this exclusion represents one characteristic of what Shayda Kafai terms nondisabled supremacy.¹⁵ Excluded, ignored, not-considered in pandemic planning and responses, “DiStory” group members labelled/with intellectual disabilities are those about whom Patty Berne voices concern, over when she explains that “during the pandemic, eugenic practices increased and no alarms were sounded.”¹⁶ Sidelined at the low-tech side of a complex digital divide during a time of crisis, our coalition-building remains in progress. In this context, the telephone comes to signify possibility, an unanticipated platform by which to connect, carry on with the work. Co-constructing found poetry—via telephone—further facilitates becoming coalition. While in many ways a lifeline, these platforms cannot replicate that which was possible in-person. We are not able to launch more radical coalition-building—cross disability and/or cross-movement coalition building—or to more actively advocate for change because, as the poems below demonstrate, we are preoccupied with oppression and survival. 

Between the lines of these poems is evidence of necropolitical, trauma-inducing policies that threaten the lives of our group members, including the pairing of Medical Assistance in Dying (MAiD) legislation in Canada known as Bill C-7¹⁷ and clinical triage protocols that, as disabled self-advocates argue, deprioritizes disabled people.¹⁸ Amid this necropolitical context, perhaps it is fair to say that we are “in-progress” rather than a more sharply defined coalition because some more than others in the “DiStory” group are still grappling with threats to their lives brought on by COVID-19 policy responses. 

In other words, these poems are not intended to symbolize a successful overcoming of pandemic times. Rather, they are an affective glimpse into a historical moment wherein labelled people struggle to stay in touch, resist social abandonment, navigate necropolitical ableism, and—through it all—leave evidence of their lives and what they are becoming in this time.¹⁹

Staying in Touch²⁰

1.

a lot of people feel 
more isolated and lonely 
since they can’t hug anybody 
I miss seeing people 
being around people is important 
you must have somebody with you 
to understand you 

I don’t have the computer
I can’t afford the internet 
The only computer in the house 
is in the staff office 
we can’t go to the library and use the computers
and internet to Google COVID-19 
I can’t go out and use a free computer

sometimes it’s way different 
sometimes it works 
and sometimes it doesn’t work 
I don’t think the virtual is the same thing 
I never used it before 
and it’s been a big adjustment 

2.

I live in a group home
I only get 25 minutes to go out 
I can sit outside
but who wants to sit outside in the cold?
I have to shower when I come back
the staff don’t want their kids to get sick 

My family doctor
never calls me
all I know is that I got my doses
that’s all that really matters 
a vaccine is a vaccine, you know
either you know what you’re talking about
or don’t talk about it

I still take care of the animals
I cannot stand to clean the cat litter
but I’m going to have to do it
I wish COVID was over right now
do you wish that, too?

3.

Resisting social abandonment²¹ 

1.

I do talk on the phone 
I would say talking on the phone is positive
I get some communication 
we all deserve 
to be alive 
to belong 

2.

I was still able to keep in touch 
with people 
so we were keeping 
some form of contact 
over the phone 

3.

I miss going to the bank 
and I need to do it 
over the phone 

I learn networking 
that was a survival skill 
because I could network 
how to get things 

he said to call 
whenever 
and I can phone her 
if I need anything 

4.

I think that isolation is worse
it’s more unhealthy than anything else
that’s what I believe. 

I can’t imagine. 
I can’t go out. 
I want people. 

COVID19 affects me. 
We’re still staying home. 

5.

what’s the government doing 
for us? 
it affects me 
we have to do something about it 
the government 
has to do something about it 

we can share it by talking about it 

we call ourselves survivors 

we’re part of the community as well 

call me 
on the phone. 

Past and Present Convergence²²

1. 

It was kind of lonely

You would never usually see

2.

Some people with disabilities 
have also experienced

It’s made my life

3.

It should’ve never happened. 

The government 
should have never 

let it 
happen. 

4.

but everyone accepts what they have 
they don’t go out anyways 
I’ve been living alone for 10 years 

I sit by myself 
I look for the single seat 

I sit by myself 
I stay home, I save lives.

I sit by myself 
stay home

I sit by myself
save lives.

I sit by myself

That’s what we have to do. 

5.

We live in persecution 
it’s an infringement on our freedom 

all the support workers tell us 
that we are conspiracy theorists 

Just be careful of your surroundings 
Those who are more vulnerable

It always is harder because of their disabilities
it’s hard to trust anybody

Becoming²³

1.

Doug Ford,²⁴ forget it
He’s only for the rich people 
the top brass
they keep turning up the heat 
He doesn’t give a damn
for the nursing homes
That Doug Ford,
the son of a gun,
he should tell people before it ever happens again

2.

things are changing because of the virus 

and it’s a totally different way 
everything’s changed 

I’m sitting in the house all the time 

and it doesn’t feel the same 
at all 

it’s changed a lot . . . 

it’s changed for everyone

3.

I don’t think it’s remained the same . . . 
it’s kind of in-between
positive and negative 

except that it’s been boring
it was kind of the same 
and kind of not the same.

I was kind of getting used to it 
and I was kind of not 

it’s just going to take a longer time

to jump back again. 

4.

I just let things come and go 
it’s different than it was before 
COVID is not finished yet 
it depends where you live 
I don’t know if everybody 
had the same experience 
as me 

5.

what I want to know is, 
when it’s going to end? 
I just wish everything was open
and I hope they come out with the vaccine
this year if possible 
they were too slow in responding
to the outbreak 

6.

7.

where’s the housing they promised?

I wish it was back to normal

that’s all that matters

that’s all that matters, right? 

the answer to that is 
I have no idea

8.

Everyone 
is supposed to be

included  

the world is changing too 
things need to be changed.
that’s up to God when I go . . .
not you . . .

and you’re not taking my life  
we all deserve to be alive

to belong . . .    

I think one day it’s going to change  
understand what we are going through  
I still think it should be
a choice  
I wish people could stick together  
I think we’re better aware of it
education has to happen 
take feedback  

now!  

she stood up for me  
I’d like to see people
getting out of the house
going to the park  
find your freedom
reconnect with your freedom  

I have reconnected to my freedom