What can Disability Justice teach us about the pathways to collective liberation?
In October 2022, MAIA invited Hazel Sealeaf to curate and facilitate Disability Justice Labs, a space held with a small number of D/disabled and/or chronically ill artists and cultural practitioners, to go on a peer-learning journey to reimagine a cultural ecology (as a microcosm of the wider world) that was rooted in non-carceral, life-affirming systems, with all of the complexities and contradictions that surface.
We were deeply honoured to be joined by: Sage Stephanou, S Aisha, Toni Lewis and Joon-Lynn Goh, alongside illustrator Sharonjit Sutton. Here, we share Hazel’s reflections on the learnings, tenderness and tangibles that emerged from our time together, accompanied by Sharonjit’s illustrations.
For the Plain Language version of Hazel’s reflections, click here.
She has also compiled a Resources document, linked here.
This blogpost is for you. This is a collection of lessons and reflections for disabled organisers, present and future. That includes you. We are all in dialogue with disability, sickness and illness, some of us transiently and some of us permanently. All of us will visit disability at some point in our lives. For those of us committed to liberation, it’s imperative that our movements, our relationships and our selves take on the wisdom, grace and complexity of disability justice movements. As part of MAIA’s journey towards this, we asked a question — “What can disability justice teach us about the pathways to collective liberation?”. This blogpost summarises how we tried to answer that question, over the course of 4 workshops with disabled, chronically ill, sick & crip artists and leaders. We hope it’s of some use to you x
Reflection #1 — Extraction & Performativity
In our first session together, we explored the question — “What does a space need to feel like in order for you to accept support?”
We asked this question knowing that for many disabled people (in particular black & brown queer women) it’s often easier to offer support than it is to accept it. This question let us dive into the weeds of vulnerability, hope, grief, and the ways we have been let down by people professing to make space for us.
As well as a laundry list of things which make us feel safe (check out the Resources page), we shared how rarely we felt supported in self-professed “progressive” spaces. Someone shared approaching another disabled artist at a conference, who said “Nobody has spoken to me for 45 minutes”.
Just because an event meets our basic access needs doesn’t mean it values us once we’re there.
In our ableist society, many people are carrying extremely harmful, almost eugenicist beliefs about the value of disabled people. We are continually told that to be valuable means to be independent, productive, passionate, intelligent, eloquent — and a host of other flawed, often racist and patriarchal terms. When this shows up in organising, it means people with visible needs and disabilities are assumed to have nothing of value to offer — and conversely, that if you are clearly adding value to a space, that you aren’t disabled. For many in our group, this meant making choices about how we wanted to be viewed — as disabled, or as valuable. Can I deal with the extra pain of ignoring a need for 30 minutes, because I know my point will be heard as more valid by the people in the audience? Can I deal with being infantalised by venue staff if it means I’ll have the support to stay and hear that last talk?
This was just the first example of a theme that kept emerging throughout our workshops — our desire to be seen as whole people. We can be both valuable and disabled. We can both offer support and need support. We can be leaders and still need to step back.
In our experiences with other artists & organisations, this wholeness was almost always missing. Non-disabled people are often flustered, impatient, almost desperate to be seen as providing visible access needs, but weren’t treating disabled & sick folks with care and humanity once those basic needs were met. As one group member said — “If people are not doing the work of undoing their internalised ableism, it doesn’t matter what work these venues/spaces do.”
We went deeper into the grief, isolation, boredom and tiredness of dealing with people whose commitment to liberation & justice is skin-deep. We talked about the confusion of organisations using language we’ve been building for years, only to realise none of the practices or values we expected to be in place are there. We talked about companies asking for access riders but not reading them — of offering opportunities for disabled artists without having clear resources, budgets or policies set aside to meet access needs (and some very helpful ideas for how to protect yourself in those negotiations — check out the Resources page).
In cases like these, where there is only a performative commitment to disabled people, a lot of extra work ends up falling onto disabled artists to be funding their own needs, sourcing interpreters, educating venue staff, looking over draft policies, and the delicate relational work of advocating for ourselves & other disabled people without putting ourselves at risk. On top of these external demands, there are internal forces pressing on our bodies. The demands of being expected to work beyond our limits, of holding stress and tension, of hypervigilance and compromise — all to provide value to organisations and people that don’t truly care about us.
Reflection #2 — Martyrs, Heroes, Leaders & People
Another common thread throughout our sessions was feeling tired and isolated within community and mission-led work.
Running an organisation, a workshop, or a space that strives to centre accessibility brings with it a strong sense of personal responsibility. We know how valuable our spaces are to people who have nowhere else where they feel safe. We also know how important it is for disabled partners, artists & staff to feel seen and held in their wholeness, to not work past burnout or have their needs ignored. But as vital as those needs are, meeting them often isn’t the true, deeper purpose we created spaces for. Balancing those responsibilities is often a fraught exercise with guilt on both sides. People shared stories of projects delayed or cancelled because of funds or time being redirected to support individuals or extend a vital space — and how that felt right and important, but also how hard it was to deal with the feelings of frustration, guilt and grief of ideas going unrealised.
The hardest thing was how alone people felt in making those decisions. In its own way, the structures of our organisations and project management created similar dehumanisation as we felt in spaces run by others. Working as leaders and managers meant contending with capitalist, ableist ideas of leaders as individual heroes and martyrs — of captains who sacrifice continually for the good of keeping the ship afloat. Again, the space to be seen as a whole person — capable of mistakes, of needing room to grieve hard decisions, to be held and supported was missing.
If this was a talk at a conference, this would be where someone mentions mutual aid networks and interdependence as vital for sustainable work. But we rarely get to talk about the messy realities of what those terms mean. What are the limits for how time and financially poor communities can offer support? What does it mean to interact with and use systems which are actively violent, but we haven’t built alternatives for yet? How does a recognition of individual power and capability have a place within arguments against individualised solutions to supporting disabled people?
We tried to answer these questions by discussing how we’d offer support to a newly disabled person — who we called Emmett. Our fictional Emmett was an ambulatory wheelchair user, trying to grapple with familiar challenges for most disabled people — managing pain, feelings of shame asking for support, confusion around benefits processes, isolation & resentment in old friendship circles and relationships.
This is where we acknowledged the pressure towards martyrdom and heroism isn’t just being pushed on us from outside. It’s something within us already. A reminder guiding us was — the systems we’re fighting don’t just exist outside of the room, they are in the room with us (and in our bodies with us.) We all had so many Emmett’s in our lives, and the urge to rush in to protect and help was always there. Yes, talking about sustainable, reciprocal, interdependent support meant talking about big, structural solutions — but it also meant discussing deeply personal, small solutions for overcoming the expectations placed on us. In a room of majority women & nonbinary folks of colour, we talked about how our sense of personal responsibility came from the complicated interplay of being raised as caregivers, feelings of value & self-worth, and watching support for our communities being eroded over decades of austerity, privatisation and hostile environments. We didn’t have easy solutions. Just a sense of deep compassion towards each other, knowing that setting boundaries is something we try to do, sometimes fail, and always comes with complicated emotions even when we do succeed.
It’s with that mixture of compassion and boundaries that we imagined talking to Emmett. We talked about the importance of allowing Emmett to tell us what he needed, and to move at his pace. It might be the wrong time to offer tangible support if all Emmett really needs is a space to grieve. When he’s ready, we talked about two different kinds of support — skills & knowledge about navigating systems, and developing internal resilience.
Of all our conversations, talking about internal resilience left me feeling the most unbalanced and naive. As someone relatively new to openly identifying and organising as disabled, every part of me still clenches at the mention of personal, individual responsibility for managing illness. After all, it’s one of the main arguments that’s been used to dismantle benefits & services, to prop up health & wellness industries and bolster the well meaning friends who are certain that if you just drink more water/go outside/exercise/go gluten free you can take complete control of your body. I still clutch uncritically to the idea that mutual aid is infallible and perfect, if we just get enough people to believe in it. It still is a vital part of how I imagine liberation, but it’s not all there is.
When we talked about internal resilience, we were really talking about individual power. People shared how often newly disabled people are stripped of their power in their own lives. The only power they are permitted or encouraged to use is the power to reach out, to plead, or to manipulate the guilt of non-disabled people into offering support. This is the effect of endless charitable ads on TV and bus stops; of the language of “overcoming”, “struggle”, and “battle”; of government depictions of benefits scroungers. It’s the societal script of what a disabled person is, and when someone becomes disabled and has no experience of anything else, it’s the only tool available to them to find support and control the outcomes in their lives. When talking about individual resilience, we are talking about fighting against this. Fighting against the idea that the only power we have is to use feelings of guilt or pity to keep us safe. To varying extents, we still have power to influence and control our lives. We can meet some of our needs on our own. We can call on our disabled siblings for support, joy & community. For those needs we can’t this way, we have power to communicate needs and ask for support in ways that do not depend on performance and emotive stories. We have the power to advocate for ourselves.
We talked about how to guide Emmett towards this different perception of himself, his disability and his power. We asked “How are you showing up for yourself?” We talked about how one of the most valuable types of support is just being an example of a different way of being — of being someone who communicates needs and asks for support out loud, without feelings of shame and guilt. We talked about needing to face the reality that there is a certain level of additional work in your life now, and not all of it can be carried by community or by systems. But that there are still boundless opportunities for joy, love and connection (for your own dose of that, check out the “Finding Community” section of the resources page.)
The other half of our discussion was about navigating benefits & support systems. Here we really focussed on resisting the myth of scarcity. Yes, there is less budget and less resource than there used to be for a lot of government support for disabled people, but in a lot of cases it’s simply been made harder to access. The support is there, it’s real and you do deserve it. This is also where internal resilience and navigating systems start to work together — we have systems designed to demoralise, to make it seem like your chances of receiving support are so slim it isn’t worth asking for it. Believing in yourself & your experience is a tremendous resource to draw from when you are advocating for yourself.
It’s also helpful when you’re caught in the precarious work of performing up & down your disability, and not losing yourself & your reality.
Because of widespread ableism & ideas of what “real” illness looks like, our systems often imagine disability as unmoving and tragic. There is no room for variable symptoms, for remission & flare-ups, or for joyful experiences even when our symptoms are at their most severe. This means there will be times when you will feel you are performing illness or health just to keep some control of your life. If your mental health starts to spiral downwards but right now you’re still coping — you might struggle to get the support to stay well without playing up those symptoms. Or if you’re an inpatient who still needs support, but your environment is making things even worse for you and you need to be at home with people you love, performing health might be the only way to get those needs met.
Community is helpful in all of these spheres. The systems we interact with to receive benefits or mobility aids or treatments might not be interested in involving you in decisions, and certainly not in your wholeness. It is up to you and the people you trust to have conversations about what a good 5 years looks like to you, what you need to move forward in your life, and what real help looks like for you right now.
Connecting all of this back together — what did talking about Emmett tell us about how to resource support for each other, fight burnout and build movements, projects & organisations with more reciprocal care? For me, the biggest takeaway was that developing our own and supporting each other’s internal resources is an essential part of interdependence. When we see community organisations and the individuals leading them as our sole sources of support — and when leaders offer unboundaried support without strengthening those around them, we recreate the systems of dependency and charity we’re fighting against.
Reflection #3 — Ancestors, Abundance & Joy
So far I’ve shared our discussions about challenges facing our disabled communities — how organisations working with us fail to treat us with wholeness and care, and how forces of internalised and systemic ableism hamper our efforts to support ourselves and each other. But peppered throughout everything were moments of resistance, joy and incredible tenderness. I think it’s rare to find spaces where that happens, where deep grief and vulnerability can sit alongside joy and hope without feeling glib or dismissive. I wanted to close this write-up by focusing on those moments, because they were also some of the most instructive for me in imagining a life more centred in disability justice principles.
Starting where we ended, our last discussion was the only time we talked about how deeply spiritual this work felt to us. We’re a group of varying experiences of faith. We talked about spirituality as a deep connection to something beyond, before and bigger than ourselves, and letting that guide our being and actions. For many of us, that connection was to our ancestors and those we will be ancestors to. When we discussed isolation, boundaries & how to make decisions about when and how to say no, many of us drew from the certainty of what our ancestors would want for us. Queer ancestors, disabled ancestors, black & brown ancestors — ancestors fighting oppression & injustice, ancestors by blood or just through the kindred lineage of resistance we understood ourselves to be a part of. Connecting with those people, however we did it, provided a powerful reframing of the (often manufactured) scarcity and urgency we felt in movement work. Understanding our historical context — the immense resourcefulness of what our ancestors faced and prevailed through, allowed us to take a breath, pause, and be certain in the knowledge that more opportunities would come beyond the present moment. It allowed us to sink into a more abundant mindset.
I talked earlier about the extractive nature of relationships between performative justice/liberation organisations & individuals, and us as disabled artists & community workers. In our final session, we discussed how the consequences of that extraction, coupled with relentless urgency, are being a major disabling force in itself. It makes people exhausted, it makes us sick, and ultimately it kills us before our time. Holding abundance & ancestors close to us helps us to resist those forces, and can also guide us towards making conscious decisions to live and work in slower, smaller ways. Often it is not in service to our communities to be trying to do everything, all the time, all at once. It is the work of disability justice to support each other to make choices within our capacity, to be sustainable and deep in our endeavours, and to trust in the abundance of our communities that we individually are not the only ones capable of offering support and solutions.
I want to close by talking about my favourite moment of the labs — where I felt both abundance and joy in a way that allowed me to loosen control as a facilitator and trust in the wisdom of the people gathered in the room. In our third workshop, I set an exercise for people to create something for their younger self — with the prompt “I give you permission to”. It was an exercise I myself struggled to even start, and it turned out to be the wrong exercise for most other people as well. There wasn’t enough time to honour the emotions coming up, or enough safety in the room at that moment.
I was flustered and tried to push through with some alternative exercises, when one of the group suggested we share why we’d found the exercise difficult instead. What emerged was one of the most insightful and vulnerable conversations of the whole project. Trying to answer the question threw open how unsafe many of us had been as children, and the frustration of being asked to give permission to somebody who didn’t simply need permission, they needed agency and power and care from the people around them.
Once again, I didn’t know how to proceed from the emotional place the group had arrived at. I took a moment, and somebody else in the group asked “I’m just curious, what moments were in your childhood to carve out moments of joy?”
Immediately, someone shared a moment of pretending to be a hairdresser while cutting grass. People shared stories about running model trains along bed frames, holding hands and smiling in the Sun. Everyone laughed. The space was transformed, everyone was lifted. It hadn’t been about avoiding the grief we’d shared, somehow the laughter was about honouring it instead. It was about remembering the wholeness of our younger selves, and witnessing each other’s joy. I felt immensely humble & grateful for the people I was sharing space with, who’d been able to hold the space in a moment I couldn’t.
There are resources, knowledge & possibilities I can’t imagine in every room I’m in, even (especially) rooms where I’m holding power. Learning to trust the wisdom of disabled siblings, to give when I can and step back when I can’t, is a lesson I’ll carry forward.
From all of us in the Disability Justice Labs,
We wish you abundance. We wish you interdependence.
