8. 19. 2023

Listen to Disabled People or Get Out of Our Way

kate klein
& griffin epstein

In the US state of Tennessee, two laws are stacked against labour organizers fighting for workplace safety: employers can’t mandate vaccines or masks, and workplaces are not allowed to be fully unionized. So, in the early days of the COVID-19 pandemic, faculty in the Medicine, Health, and Science program at Vanderbilt University in Nashville took matters into their own hands. Faculty created a free “mask bank” for students and staff by pooling their resources to buy and distribute high-quality masks. As professor Aimi Hamraie remembers: “Eventually we tried to get the university to let us pay for those masks out of our research funds, because…we were providing what should be an institutionally provided resource and service for people. And they wouldn’t let us use our research funds to buy masks because there’s no category in their system of reimbursement for PPE.” The workers involved recognized they shouldn’t have to pay for workplace personal protective equipment (PPE), but the university wouldn’t budge, and they weren’t going to put themselves or their students in danger.

Vanderbilt University excused its unwillingness to participate in community safety by citing the lack of a precedent or a pre-existing framework for doing so. Many workers across the US and Canada have faced similar hurdles when trying to organize in response to a massive global health crisis. In May 2023, we – kate and griffin – published an article in Briarpatch Magazine exploring how unionized workers are pushing union leadership to understand COVID protections as part of a broader disability and accessibility framework. After facing our own struggles as disabled educators trying to bring a disability justice consciousness to our union local, we were inspired to reach out to other workers. We hoped to hear powerful stories of union leaders mobilizing for COVID safety, and to learn from their victories. Instead, we found people struggling in the same ways we were: small groups of committed workers making modest gains and building support networks, but failing to move the needle within the broader union infrastructure. 

Workers deserve the kind of protection and power that comes with being unionized. But formal unionization is not the only way to organize a workplace. As we did our research for the Briarpatch article, we connected with many other educators and post-secondary workers organizing outside or against their existing unions – or in the case of the faculty at Vanderbilt University, without the protection of a union at all. In most of these cases, the work was being led by disabled, chronically ill, Mad, neurodivergent, and/or psychiatrized workers, with support and solidarity from colleagues with pre-existing commitments to collective struggle. As disabled activist and writer Alice Wong reminds us, disabled people have always been “oracles,” anticipating the contours of future oppressions and strategizing ways to keep people safe. Hamraie’s department at Vanderbilt was full of people who teach about the social determinants of health, researchers examining the history of AIDS activism, disability scholars, and workers with experience doing mutual aid organizing – lineages that allowed them to clearly see the wisdom in approaches to organizing that prioritize grassroots adaptation and collective response. 

What happens when the institutions that are meant to protect us fail to understand what protection looks like or cannot imagine new ways of organizing beyond conventional union tactics? What can the broader labour movement learn from the creative interventions made by workers whose identities, experiences, and commitments ensured that they didn’t have to rush to catch up when the pandemic hit? What might all workers, unionized or not, gain from understanding disability justice as a lens and a set of material practices that not only belong in, but might help to expand, the labour movement – including but not limited to trade unions?

Disability, ableism, and labour 

While COVID-19 disproportionately threatens people who already face structural oppression and/or who have pre-existing health conditions or concerns, the pandemic is also itself a mass disabling event. The World Health Organization (WHO) estimates that 10 – 20% of all COVID infections result in potentially life-altering Long COVID. As a result, there is a growing population of disabled people, at least some of whom are members of unions, fighting for support from their employers. And yet, according to disability rights advocate and policy analyst Ariel Adelman, the labour movement continues to fail to incorporate disability justice into its organizing work. Adelman examines the historic strikes of workers at the University of California (SRU/UAW), US-based Starbucks stores (SBWU), and US rail workers (multiple unions), explaining that they have “fallen short of their own ideological goals.” For example, while Starbucks workers included pandemic protections in their demands and rail unions fought for sick leave, neither group enforced COVID safety standards for their strike actions. Disabled workers in SRU/UAW have made multiple public statements about the lack of attention paid to COVID-19 safety throughout the bargaining process. As Adelman writes, “The lack of explicit support from workers’ unions for broader pandemic safety measures…harms workers and society at large.” This lack of support deepens what Adelman identifies as the already-existing “ableism in the labour movement.” 

Ableism is often misunderstood as a form of oppression wielded exclusively against people with specific conditions that have been legitimated as disabilities by the medical industrial complex – misunderstood as separate from but, as the Ontario Human Rights Commission (citing the Law Commission of Ontario) writes, “analogous to” other forms of social oppression. The disability justice movement understands ableism more broadly. As Talila “TL” Lewis puts it,” ableism is “a system of assigning value to peoples’ bodies and minds based on societally constructed ideas of normalcy, productivity, desirability, intelligence, excellence and fitness,” all of which are “deeply rooted in eugenics, anti-Blackness, misogyny, colonialism, imperialism and capitalism.” These interlocking forms of oppression – and the expectations they set for individuals’ behaviour – affect everyone, albeit in different manners. In this way, Lewis argues, “you do not have to be disabled to experience ableism.” Disability identity is also complicated because it is both gatekept and stigmatized: many people do not readily or easily claim the label of “disability,” even if they have chronic health conditions, mind and body differences, and/or access needs that are unmet by our current social structure.

Despite this breadth of disabled experience, most unions see ableism as a niche issue, disconnected from other forms of workplace oppression, and treat disability as anomalous rather than common within the workforce. As such, although unions have often advocated for accommodations and/or compensation for workplace injury, they have rarely understood disability as scholar Sami Schalk defines it: “a political concern” requiring not only individual support but also collective action.

The COVID-19 pandemic could have been a turning point for the labour movement. And it has had an impact on some unions’ organizing demands: for example, Adelman’s article highlights the Chicago Teachers Union’s pivot to remote instruction in response to unsafe classrooms, and strikes by transit workers and others to protest unsafe working conditions at the beginning of the pandemic. “Unfortunately,” Adelman writes, “most unions have not continued this kind of action; few recognize that the pandemic has no end in sight.” 

We wonder: what would it look like to follow Alice Wong’s lead and see disabled people as organizing oracles, central to labour justice? As disability and transformative justice movement worker Leah Lakshmi Piepzna-Samarasinha writes, “We have the power to transform the world from the hellscape it is in right now to one oriented around care, safety and everyone having enough.” But this can’t happen if we limit our imaginations and allow the mainstream labour movement, with its narrow scope, to be our only option for workplace organizing.

Tethering ourselves to a community of disabled workers

According to foundational disability justice performance project Sins Invalid, disability justice organizing is driven by sustainability rather than urgency, asking that organizers and communities “pace ourselves, individually and collectively, to be sustained long term” and reminding us that “our embodied experiences guide us toward ongoing justice and liberation.” This kind of organizing invests in “flexibility and creative nuance,” asking us to experiment and rethink constantly. It insists on interdependence and building alternative social and political structures, “knowing that state solutions inevitably extend further control over our lives.” It does not rely on vanguards or a figurehead who fits a narrow, ableist image of a “charismatic leader.” Instead, it makes space for people to bring their unique skills and capacities to collective work. These material practices can be seen in the labour organizing of the Disabled Academics Collective (DAC), founded in the summer of 2020 by disabled historian Nicole Lee Schroeder.

COVID-19 hit as Schroeder was in the final stages of her PhD. “Because I’m a historian of medicine and disability, I knew this was going to go bad,” Schroeder told us. “We have to prep for the long haul – three to five years, at least – and we have to prep for the rise of eugenics.” In the summer of 2020, Schroeder posted on Twitter to ask whether other disabled scholars would be interested in creating an online space “where people at all levels of the academy can connect with each other.” The response was overwhelming. She gathered a group of interested people, and in July 2021, on the 31st anniversary of the Americans with Disabilities Act, launched the Disabled Academics Collective. Though the DAC has advocacy-focused public-facing resources, at its core is its Discord server, an online discussion hub for approximately 800 disabled students, faculty members, and independent scholars to build solidarity, community, and collective care. The choice to use Discord as an organizing platform was intentional: the DAC is designed to be “a repository of disabled peoples’ knowledge,” and Discord is easily searchable and saves all posts. “Many newly disabled people, especially with Long COVID, are realizing the academy is no longer structured for them,” Schroeder told us. “I wanted a space to allow people to do that early learning – you can read through these posts, see other peoples’ experiences, get feedback, ask questions.”

The DAC Discord also supports labour self-advocacy. As disabled workers, Schroeder notes, “we’re often told that we’re the first person to ask for an accommodation at our institutions. I wanted people to be able to say, no, there’s precedents – I know people at other campuses are getting this.” But it was important for DAC to remain autonomous and decentralized – and, particularly, that it provide resources that unions can’t. “We have a lot of unions in the US,” Schroeder says, but few of them are “actually engaging in radical action. They’re just like, ‘Let’s pay people an okay wage.’” She continues, “I have seen some institutions and faculty groups push to establish mask mandates on their campuses again, that is true.” But, she adds, unions such as the one at the University of California will often “abandon” disabled people in contract negotiations. For Schroeder, this is because of a lack of disabled people and disability justice analysis “in the room.” She says: “You need people who are aware of disability. I’m a part of my union, but I’m not active in it. I don’t trust them to fight for me when I’m not there in the room, raising every single point about accessibility. If other people are in the union, and I see them unmasked, then I already know, you’re not fighting for me.”

Ultimately, the DAC functions as a way to connect people to one another and to relevant social movements, outside a single workplace. Schroeder’s hope for her own work, and for the DAC, is to help disabled people across academia “tether themselves to a community they didn’t realize is as expansive as it is, reclaim histories they have not been told or long denied, and see themselves as something bigger.” This is where power – and change – comes from.

A place where we take care of people

In interviewing union representatives for our Briarpatch article, one thing that became obvious is that many conventional mechanisms for pursuing labour justice have become almost impossible to use when it comes to COVID-19. It’s very difficult to prove without a shadow of a doubt that you got COVID in one particular location, so workplace health and safety claims have been getting rejected even when transmission has happened at work. People often can’t get workplace accommodations unless they have a medical diagnosis for themselves, which means they won’t be entitled to access to remote work – let alone universal masking – if they, for example, live or are in close community with somebody who is immunocompromised. It’s hard for union members to file a grievance related to COVID when everything in the collective agreement was designed for pre-pandemic times. A recent ruling by a California court that workers cannot sue over COVID-19 spread to their households may have a chilling effect on union organizing around COVID, even beyond the United States. It feels clear that unless labour organizers find new language and frameworks attuned to the present moment, workers will continue to be left inadequately protected. 

In truth, traditional labour rhetoric has long ignored disabled workers and pushed issues related to ableism to the sidelines. But disability justice-informed language has a lot to offer the labour movement right now – so long as labour organizers are willing to challenge the internalized ableism (and misogyny) that may lead some to see this language as “weak” or “soft.” 

In June 2020, scholars across the social and health sciences formed the Accessible Campus Action Alliance and published a statement called Beyond “High-Risk.” Its initial focus was to pressure universities not to return to in-person learning. As one collective member explained: “So many universities were relying on the accommodations process to cover COVID safety, and we didn’t think that that existing structure was adequate for getting people the access that they needed. We were basically making the argument that everyone is affected by this, so it shouldn’t be an individual accommodation process.” Treating disability accommodations as a case-by-case bureaucratic process limits workers’ imaginations, and makes it hard to see these issues as a collective matter.

Instead of relying on traditional labour frameworks such as “workplace health and safety,” “equity,” or even “disability rights,” the Beyond “High-Risk” statement centred on a different concept: “care.” The member we spoke to acknowledged that “care is a contested term,” but argued that “it provides a useful contrast against more economic frames and calculations.” In some ways, the choice of words was pragmatic: in the US, federal legislation defines faculty at private universities as managers, so they’re not allowed to unionize. Using rights-based language linked to the labour movement could therefore have jeopardized their political work if they were accused of stepping outside the bounds of what they’re allowed to fight for.

But “care” turned out to be a concept that travelled. The statement caught on, sparking a national conversation about what kind of institution a university could even be; as of this writing, it has over 60 pages of signatories. The collective member we interviewed emphasized that this success has helped many workers expand their imaginations of what’s possible: “A university doesn’t have to be a real estate developer. A university can be a place where we take care of people.”

What does it mean to “take care” in a workplace? If unions attempt to understand “care” legalistically, as a right that can be fought for or a line item to be negotiated at the bargaining table, so much is missed. “Care” as understood in the Beyond “High-Risk” statement is about human relationships, about experiences of belonging, and about imagining a world that is organized according to different priorities. If unions see themselves as bureaucratic rights-administrators meant solely to enforce and update collective agreements, “care” is not a concept that’s likely to be useful to them. But if unions were to see themselves as vehicles for broad social movements, and as vibrant hubs where workers could get organized around issues that matter to them, wouldn’t it make sense to lead with ideas that move people? Wouldn’t it especially make sense to lead with ideas that resonate with workers who may not have historically seen the union as a place for them? Can a union articulate a radical vision of what our worlds of work could look like? Or do we need other kinds of organizations for that?

Building power amongst disabled workers

Organizing for disability justice outside the union structure is personal for us (kate and griffin). As disabled faculty at an Ontario college, we know the limits of what unions can offer. Last spring, in the middle of an Omicron surge, Ontario college workers very nearly went on strike. Though we were fighting for better working conditions, our union’s plans for executing a strike did not include any safety measures to prevent COVID-19 transmission or meaningful accommodations for workers unable to make it to campus to picket four days a week. In response, we offered to organize a Sick and Disabled Access Team, to come up with creative solutions to ensure everyone could be included in our workplace strike action. We were not taken up on our offer. 

Though the strike was averted, the need to organize at our workplace did not disappear. We continued to negotiate with the union to create a working group focused on bringing a disability analysis to our local. We were told it would be hard for us to start this initiative through the union unless we were to become formally involved with the union as stewards; at the same time, we were told that as stewards, our activities would be focused mostly on upholding the collective agreement, and we would need to be very careful not to encourage any grassroots actions that might be seen as “insubordination” by our managers. In particular, given Canadian labour law, we would need to ensure we were never “encouraging employees to participate in an illegal strike” – taking some potential labour actions off the table.

We recognize the need for a union to uphold the limited rights guaranteed to workers by a collective agreement. However, as people interested in grassroots struggle more than service provision, these limitations concerned us. Instead of becoming stewards, we decided to found an autonomous worker-led group called College Workers for Access, a “disability justice-focused space in a pandemic world for people left behind in the ‘return to normal.’” While we wanted this to be a space where people could find emotional support during a moment when our employer had made it clear we were expected to navigate the risk of COVID entirely alone, we also hoped that our monthly gatherings could be a space to cultivate a radical disability politic amongst our coworkers and move towards action outside the union. 

It quickly became clear to us as organizers that there exists a whole segment of the workforce that was and still is completely ignored by both our employer and our union. People with permanent disabilities – and therefore permanent access-related needs – were feeling lost in an accommodation process designed around time-limited injury and illness in a pre-pandemic world. Immune-compromised and otherwise higher-risk people, and those with personal, interpersonal, or ethical concerns about contracting or transmitting COVID, were struggling to have their legitimate worries and principles affirmed by either their colleagues or their bosses. Some had been sitting with the question of whether they would be able to continue in their line of work in the face of so much risk, or whether they would be quietly pushed out by their employer, especially if they were on contract.

As of this writing, College Workers for Access has existed for one full year. Our gatherings have spanned a range of feelings: sombre, rageful, tender, disillusioned, and hopeful. Together, we have listened to each others’ stories; researched and built a political analysis around our rights in the accommodations process; laughed together and made morbid jokes as a way of collectively coping with impossible circumstances; and planned public forums to discuss how to translate accessibility frameworks that we use with students into the contexts of our own working lives. 

What makes College Workers for Access different from many conventional union-led disability frameworks, which tend to focus on facilitating accommodations under the collective agreement, is that we see disabled workers as a potentially powerful labour bloc. If governments and employers continue to refuse their responsibilities around workplace health and safety, more and more workers will become disabled by COVID-19. We are seeing this today. When we spoke with our union local executives about our experiences, we told them that the widespread abandonment of COVID safety measures could realistically result in disabled workers being eliminated from the workplace en masse. Seeing disability solely through the lens of workplace accommodations runs the risk of understanding disabled and chronically ill people as an administrative burden rather than as potential organizers. 

As we begin our second year of College Workers for Access, we are still deciding how much energy we want to put towards convincing our union local to change its practices and address its ableism. We see some promise in divesting from the union entirely and building something that holds more excitement for us as radical educators with investments in intersectional grassroots organizing. We do hope, though, that our colleagues at the union may learn from what we are able to accomplish when we imagine what connection between workers can look like beyond negotiating collective agreements and filing grievances.

Through our work in College Workers for Access, we want to help all workers at our college to understand how a disability justice framework can benefit them even if they have not historically read themselves into the category of disability. In doing so, workers may be better able to  see how, as people with bodies labouring under racial capitalism, the liberation of each of us is bound up with the liberation of all of us. As Sins Invalid co-founder Patty Berne reminds us: 

A Disability Justice framework understands that all bodies are unique and essential, that all bodies have strengths and needs that must be met. We know that we are powerful not despite the complexities of our bodies, but because of them. We understand that all bodies are caught in these bindings of ability, race, gender, sexuality, class, nation state and imperialism, and that we cannot separate them. These are the positions from where we struggle. We are in a global system that is incompatible with life. There is no way to stop a single gear in motion — we must dismantle this machine.

Labour unions’ current approach to disability could not be further away from this vision. Instead, it focuses on tweaking the capitalist labour system, chasing slight amendments to collective agreements and accommodating individual workers. The traditional labour movement has not yet begun challenging the broader ableism that underpins the institution of work itself. In this way, it not only fails to stop the machine, but is part of what keeps the machine running. 

Recognizing this reality, we have several options as organizers. We can try to change the mainstream labour movement so that it better understands and incorporates disability justice. We can honour that there are in fact multiple labour movements and invest in those that are already organizing against ableism as a form of social oppression constituted by and inextricable from all other forms of social oppression, especially white supremacy. Or we can move away from trade unions as the primary framework for workplace organizing and try something different. In any case, one thing is clear: to meaningfully protect workers in a world that is decidedly not post-pandemic, unions will need to listen to grassroots movements led by disabled people and other oppressed workers – or else get out of our way.