In 2002, when I was 9, I was diagnosed with an autoimmune disease and a mood disorder.

I remember a few things about those months: blood in the toilet bowl, waiting rooms in beige, wooden toys, and watching my mother’s tired, wet eyes as I was wheeled into an operating room.

All images by: Jewels Stevens

As a child, I didn’t understand myself as having a disability. I understood myself through the language of disease – as in “a harmful deviation from the normal structural or functional state of an organism”, according to Encyclopedia Britannica.

I still recall the handful of conversations I attempted to have with friends at the time, palms up and outstretched, imitating the length of inflammation throughout my bowel. I repeated what words I knew: ulcers; colon; chronic – which is to say, there is no cure.

It wasn’t that people were unkind, or unsupportive, but I knew that they didn’t – couldn’t – understand, and I didn’t know what to do with the feeling of loneliness that ensued.

I didn’t recognise my experiences as those of a disabled person until I was 20 years old and integrating into the inner-Melbourne queer scene. Being seen by a group of like-minded, weird and wonderful people taught me that love and longing are antidotes to loneliness.

Despite variation in our histories, I sought solace in what we shared: an otherness.

Following a six-month bender that culminated in a bad case of glandular fever and a psoriasis flare-up, I was forced to confront what we did not share – what able-bodied queer people, much like able-bodied straight and cisgender people, could not understand.

I was clambering to stay seen in a scene that relied on mental and physical presence, while my mind and body increasingly needed to withdraw. No matter the occasion, whether a club night or a demonstration, events I would have previously attended with relative ease were suddenly inaccessible.

I could not be held by a community that I could no longer access.

I watched from the edges as other queer people I knew realised they had a disability, became disabled or experienced an exacerbation of their pre-existing disability. I watched as other queer people lost access to their communities.

It was here that I discovered the shared legacy of loneliness and isolation among queer people who also experience disability. It was also here that I built relationships and community with these people.

Similar community-building led to a group of Black, brown, queer and trans people forming the Disability Justice Collective in the San Francisco Bay Area in 2005, consequently establishing the framework or movement that is disability justice.

Disability justice came about in part as a response to the disability rights movement, which historically situated disability as a single-issue identity. The disability rights movement centred people who could achieve status and power through a legal, rights-based framework without addressing how disability intersects with race, gender, sexuality, age, immigration status and more.

Members of the Disability Justice Collective instead sought to carve out a space that would centre disabled people of colour, immigrants with disabilities, queers with disabilities, trans and gender non-conforming people with disabilities, people with disabilities who were houseless or incarcerated, and people with disabilities who have had their ancestral lands stolen, among others.

Disability justice understands how ableism was created and emboldened in relation to other oppressive systems, and how ableism is inextricably tied to histories of settler colonialism and capitalism.

As a result, disability justice is an inherently intersectional and anti-capitalist framework, borne from an understanding that we cannot protest ableism without protesting the systems that allow ableism to prosper. These are the same systems that enable racism, sexism, transphobia, whorephobia, Islamophobia, ageism and prejudice based on criminalisation, incarceration or immigration status.

Founding members of the Disability Justice Collective Patty Berne and Mia Mingus also came to disability justice in response to the ableism they were experiencing in progressive and radical spaces.

Recognising a need to address ableism in these spaces, Berne and Mingus engaged in relationship- and community-building with other queer and disabled organisers and cultural leaders, most of whom were also people of colour.

They saw a need to build something that didn’t exist at “the margins of the margins of the margins of the margins”, as Mingus described it in a keynote speech she gave at a Disability Intersectionality Summit – a space that could hold the complexities of our identities and our histories.

Though I hadn’t yet discovered disability justice, the conversations I was having with loved ones in the queer community echoed many of the sentiments I would later read about in my disability justice work.

Too disabled for the queer community and too queer for the disability community, we came together to grieve, love and care for one another – something adjacent to family in our recognition of each other’s histories.

In these moments of connection, I experienced what I would come to know as ‘access intimacy’, a term Mingus describes in her blog Leaving Evidence as that “elusive, hard to describe feeling when someone ‘gets’ your access needs”.

For me, this looked like having people accompany me to specialist appointments, organise our transport, pack us snacks and hold my hand in the car. It looked like arriving at a gathering and being greeted with a chair and a glass of water. It looked like a vegetarian lasagne dropped at the door.

These seemingly small gestures let me know that I was loved, and that the people who loved me were listening intimately to my access needs, and I to theirs.

Access intimacy isn’t unique to disabled people – anyone can experience it – but it is a kind of intimacy that many disabled people will be familiar with. It doesn’t depend on a politic, but on a willingness to wholly love and respect one another, and to trust each other in how we articulate ourselves.

Experiencing access intimacy in my small but unfathomably kind and daring queer and disabled community led me to the work of Leah Lakshmi Piepzna-Samarasinha. Here I discovered collective access – access as “a collective responsibility and pleasure”.

Described as a toolkit for people in communities that looked like mine, Piepzna-Samarasinha’s essay collection Care Work: Dreaming Disability Justice outlines a framework for understanding the kind of movement towards collective access and collective liberation that I had long been in search of.

It was here that I learnt names for the acts of love and care that I had been sharing with my community. With access to these tools, I came into conversation with more and more people whose experiences mirrored my own.

Together, through these conversations, we arrived at a desire to give the disability justice movement a home in Australia.

As both Indigenous and non-Indigenous disabled people living in Australia, we wanted to pay necessary attention to the inherently disabling nature of dispossession and displacement, including the decimation of land, water and skies, experienced by Aboriginal and Torres Strait Islander peoples across this continent.

We also wanted to pay attention to the unique experiences, pain, strength and resistance of First Nations people who live with a disability.

Building towards a community in which we could love, care for, hold and strengthen one another – “a vision born out of collective struggle”, as Berne describes it – we established the Disability Justice Network in Australia.

Disabled people across Ngunnawal and Ngambri, Wurundjeri, Bunurong, Gadigal and Kaurna lands came together with a collective vision: collective access and collective liberation.

Though still in its pupa stage, the Disability Justice Network envisions a world where disabled people – including queer disabled people, Black and brown disabled people, disabled people of colour, criminalised disabled people, incarcerated disabled people, disabled drug users, disabled sex workers, and any other disabled people who experience oppression at multiple axes – are wholly loved, supported and liberated.

As a child I experienced a loneliness that still causes me great sadness to recall. I will likely always grieve the parts of me that I sectioned off, scared to intimately show myself to people that I knew could not understand. But I know now what it’s like to be seen in my entirety.

I have experienced disability justice in action, which is to say that I have experienced love.

Though I know there are many disabled people – including disabled children – who are still sitting with their loneliness, I can only hope that continuing to dedicate ourselves to disability justice means dedicating ourselves to a world grounded in collective access, collective liberation and love.

This article first appeared in Archer Magazine #16, the DISABILITIES issue.

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Julia Rose Bak is a queer, Māori-Polish writer, survivor and abolitionist based in Narrm, so-called Melbourne. Their writing centres on trauma, collective healing, care work, and their experiences growing up with chronic illness.