Isa Hukka

A Crip Artist’s Perspective: Possibilities of the Abled Illusion

By Isa Hukka

Content notes

ableism, disablism, inaccessibility, institutionalization, medical discrimination, eugenics, colonialism, racism, classism, queerphobia, violence, trauma, COVID19, death

Accessibility

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Helsinki, August, pandemic month number 18. The gentle sunlight caresses me limping towards the tram stop, my armpits freshened with scent-free products, my body carrying carefully curated clothes for performing, my backpack bearing the pill organizer and scripts I printed out for my crip friends, who might need them today. At the venue door, I sigh in relief because the inadequate accessibility information provided at least seems to apply. The event organizers—wonderful people working with and for poetry—happily greet me. We catch up for a moment, although I maintain many meters distance, since for some reason, not all of them are wearing masks. During our conversation, my eyes wander to the stage. Everything seems to be in order: the lighting is bright enough, a video camera stands ready for streaming, and the decor is inviting. But then my crip gaze drills into the five steps: a concrete reminder of what kind of people the organizers consider to be potential performers. I freeze. I keep staring at the stairs as they rip open the earth underneath, forming a gaping pit between me and them. ‘Would they have asked me to perform if I didn’t pass as abled?’ That day in August is just one of the countless, confusing moments when I oscillate between abled and crip worlds that have diverged further from each other more strikingly during the pandemic. 

Abled reality flooding in

It is essential to note that this text is produced in the contexts of Finnish language, and the Finnish social, historical and political landscapes. One goal of the text is to continue and contribute to the project of creating and widening Finnish crip vocabulary. Therefore some central terms, like “crip” and “abled” (Note 1) do have slightly different meanings from what English-speaking readers might usually find in many other disability and crip contexts.

A large number of so-called non-disabled or healthy people in this society are living in some version of what I call the abled reality, or pinkojatodellisuus in Finnish. “Pinkoja” is derived from the Finnish verb “pinkoa”, and it means someone who is running for their life, speeding, and dashing. Our small Helsinki-based collective Just Another Crip Group invented and started to use the term in 2020. We needed Finnish words to describe our lived experiences in an ableist society. And we also needed a sort of a counterpart of the crip. But now, to make this translation more sensible, I use the term “abled” in this English version—although more specifically the word in my mind is “pinkoja.”
At the center of the abled reality is of course the abled itself: a non-disabled, individualistic overachiever who races forward at a dizzying speed. Establishing ableist norms, the abled speeds toward career goals and self improving hobbies, swinging in and out of burnout, forgetting all about some crips left behind. The abled has convinced many of its supposed neutrality. The abled is allowed to claim it would embody the default settings of humanity: it is a white, “normally” walking, hearing, seeing, speaking, neurotypical, and “healthy” individual that survives without help from others (as if that was possible). In reality, it is a disabilist, colonialist, and neoliberal character; it is a manifestation of only one type of Health, Beauty, and Success, that is always already late for its next meeting.

When the abled focuses its gaze on the crip, it sees lacking, whether examining an individual, a community, or a crip organization. Through the abled gaze, the crip is a pathetic almost-human without a future. In the eyes of the abled, “impairments”, “disorders” and “diseases” are self-inflicted, or alternatively tragic incidents; they are medical problems in an individual’s body/mind which most importantly, need to be cured. ‘I wonder what kind of quality of life those people even have…?’ (Note 2) In public space, the abled gaze aims to control us, stare the crips into otherness. In past centuries, the abled has formulated ableist (Note 3) practices and systems to, for example, isolate us from society and each other. The abled cleans us away into facilities, dehumanizes us using so-called Western medicine as a tool, and at worst, it eliminates the bodyminds categorized as “deviant”.

The pandemic has only accelerated the speed of the abled. It reaches me at every turn. Even though I try to take a break from the news, or dodge engaging in the public discourses it dominates, still, the abled world floods in almost every time a non-crip person in my life opens their mouth. ‘So you’re asking if people are going to wear masks at the opening night of my exhibition? Well, I’m not sure… Maybe it’s just easier for everyone that you don’t come this time…’ I give up and watch the news again. I witness the abled artists loudly defending their own interests and demanding the removal of protective measures; the ableds debating about the pros and cons of using a face mask; the ableds complaining that safety measures (a.k.a. accessibility) costs too much for art institutions; the ableds throwing huge premiere parties; the ableds discussing in a news studio about how the Economy has to be “liberated from the oppressive restrictions”; the ableds producing more inaccessible performances than ever before; the ableds bemoaning in the news papers how “those immigrants” don’t get vaccinated at a pace dictated by the abled supremacy; the ableds insisting on certain art institutions opening at the cost of risking others’ health and lives; the ableds longing for “going back to normal”; the ableds presenting calculations on how many human lives it would be worth to sacrifice for the “new normal”; the ableds pretending that the pandemic is over; the ableds demanding their “right to work” in a field that has always been inaccessible for marginalized artists; and some abled experts making eugenic (Note 4) statements. Wonderful news, the virus only kills the vulnerable!

The crip reality created by us

Simultaneously in crip reality, people around me isolate at home to take care of themselves and others. We are scared to visit the grocery store for a moment; we constantly quarantine for 10 days to be able to meet one friend inside; our essential treatments are rescheduled and canceled; we are relieved to finally get the chance to study online, and when it is again taken from us, we write exhaustive emails to the deans and equality representatives; our personal assistants get exposed and we constantly reorganize our day-to-day lives; we draft instructions for at-risk daily living together because THL (Finnish institute for health and welfare) and our doctors abstain from giving any advice; we live with long covid on top of all the existing illnesses; and we wonder what to do when our chronic illnesses flare up, but we can’t go to the emergency room because of COVID19.

We start building community, fostering mutual aid and radical care, more determined than ever. We make up strategies, because we have to. We offer peer-support on the phone; create Telegram groups; initiate crip organizations and care networks; collect the money for our friend who needs to see a specialist in the private sector; do endless video calls; look for and share research on long covid; deal protective face masks to one another; and stand like statues in -20 degrees celsius weather, distancing and wearing masks in order to meet each other safely.

Crip (Note 5) is a political identity, a way of being and resisting that does not swallow familiar conceptions of disability. I use the term “crip” here, but again I am referring to a more Finnish-specific word, “rampain my mother tongue. Rampa is one possible translation for the term “cripple”; it’s a derogatory, older Finnish word.

From the rampa/crip perspective, disability is constantly changing, polyphonic, contradictory, and above all, political. Cripness confronts the passivity often imposed on sick and disabled people. It expands and rewrites the category of disability: anyone facing systematic inaccessibility and somehow made disabled, sick, deviant, atypical, etc. by society, can identify as crip—whether they are physically disabled, mentally ill, autistic, chronically ill, deaf, a survivor (Note 6), etc. The crip and disabled communities constantly discuss terminology, and we all need to understand the right for self-determination (see CDSC 2022, Clare 2015: 84-85, Lindström 2021, Piepzna-Samarasinha 2018).

There are many different crip movements within different contexts. Crip groups, collectives, and institutions focus on various issues, like for example academic crip studies, arranging crip art festivals, organizing radical care at a grassroot level, or psychiatric abolitionism (see Akua Mensah 2022). In particular, all of them are built on rethinking disability, political action, radical access, and community-centeredness. Many crip movements are intersectional (Note 7). Many of us multiply marginalized persons cannot find our place in the more mainstream disability movement(s), that QTBIPOC (Note 8) crip and disabled people especially have criticized for being dominated by whiteness and hetero sexism among other things (see Piepzna-Samarasinha, Sins Invalid 2019, Kafer 2013). Inside crip communities, recognizing and facing differences is essential. What kind of inaccessibility do I face, considering that I am, for example, a university educated, white, seeing, hearing—and most of the time walking—crip in Finland? How do I truly include other crip realities and needs when striving for justice? Mutual aid, solidarity, community, love, and the goal of truly supporting all bodyminds is what breathes life into the crip.

Identifying as crip, and organizing in crip movements, can also be described as a way of surviving in the world of the abled. In a recent black feminist context, Minna Salami writes the following; “For a margialized identity to be a source of joy, it cannot by default exist as an instrument of resistance. Conversely, for an “othered” identity to be a source of resistance, it must be a source of joy” (direct quote Salami 2021: 79). This thought can be applied also when building a crip world. We do not exist to reveal the nature of the abled, or to smash the structure it upholds. If we use a great deal of our energy to resist the gaze of the abled or try to keep up to its speed, the abled has already won. We are crips for ourselves, each other, the coming and past generations of crips; we are crips for a more sustainable, pleasurable, and just future. What are all the ways we could create even more crip culture, joy, pleasure, and love?

The illusion of the abled and its possibilities

In reality, the crip and the abled are not so distinct. Fundamentally, they are the same. The crip is just the only one identified as vulnerable. Its existence reminds the abled of this reality, which makes it run for escape even faster, and to take part in producing an abled society. In the abled culture, an unbelievable amount of work is done to cover up the fact that at any moment anyone can become sick or disabled—and need more help, care, and support.

When the abled turns its gaze towards the crip, it does not see us. It sees its own fears. It is forced to stop, challenge its worldview, and look at life as it truly is: constantly evolving, and finite. The abled sees that suffering, getting sick, and dying are aspects of life. It recognizes that our current society was not built in a way that would advance everyone’s wellbeing, and guarantee the essentials for a good life, or even survival. If the abled really faced these issues, it would be impossible to defend a capitalist society based on abled supremacy.

At first, the pandemic did destabilize the striding of the abled, reminding it of its own fragility. At this moment, Summer 2022, inspired by journalist Katja Martelius’ column (Martelius 2022), one could say that the abled pretends it could be possible to live like it did in February 2020, as if its life depended on it. Does clinging onto this illusion partly explain why the ableds dismiss the virus, long covid, and crip perspectives of the pandemic? Is this behind all the eugenic speech during covid: claiming it’s “inevitable” that we sacrifice part of the population, so that the privileged can move on with their “normal” lives? Is this connected to why the ableds in the art and cultural fields distance themselves from the realities of people at-risk even more than before? Does this partly explain how people had the nerve to organize a protest by the cultural and event industries on 3 February 2022 in Helsinki, where they carried an actual coffin purported to symbolize “the death of culture” while claiming that the cultural industry is the one suffering from “the real” long covid (JACG 2022)? I wonder how we’ve arrived here. For those living in the abled reality, it is possible to limit their sphere of empathy, excluding things that in reality affect all of us. Why are some people so accustomed to ableism, disablism, and the dismissal of crips that this becomes unrecognizable to them? We live in such an all-encompassing hubris of the abled that other kinds of experiences are left far behind.

As one wise crip friend of mine put it, one of the powers of the crip lies in its invisibility to the abled gaze. The abled doesn’t recognize many of us to be crips in the first place, since it’s mainly searching for certain mobility aids, or a way of moving that it judges deviant. It does not understand its friend’s bicycle to be a mobility aid, or identify the signs of chronic pain in a colleague’s bodily expression. It can’t even imagine how many people around it are actually crips. Even though this non-visibility makes our lives tough sometimes, it’s a remarkable opportunity. The abled cannot recognize the impulses of crip resistance, vibrating everywhere. So it cannot take away our crip joy, our crip spaces; and it cannot escape the mycelium of crip love that will, in the end, envelop it, no matter the speed.

The abled gaze contains a possibility to practice crip solidarity. For example, as a mostly walkie, educated, white, abled-passing artist, I have access to many spaces and conversations made inaccessible for many other crips. How to make these spaces accessible – for crips and other people shoved to the margins? Is it possible? How to crip all the stages which require one to walk up countless stairs, speak a certain language, have a certain education, and look a particular way?

One is not born, but rather becomes, a crip

Helsinki, January, pandemic month number 22. I am talking on the phone with a lovely queer crip artist I’ve just met online. We found each other through social media, which for many of us, has recently been the only safe platform in which to meet new people. We learn that during the pandemic, we simultaneously developed a model of organizing a more accessible performing arts event for people at risk, unaware of the others’ efforts. We share our irreplaceable crip knowledges; we dream of a show in which we hope those systematically excluded might have a chance to be present.

At the end of the phone call, the colleague asks how I would summarize my crip experience at the moment. After Simone de Beauvoir, I answer that one is not born, but rather becomes, a crip (Note 9). This becoming unravels through embracing a crip identity, finding your communities, acting in solidarity, and the processes of cripping your life—or something like that. My colleague and I laugh with relish. I think to myself: how wonderful that we have become us. A crip world, a crip art field, is already here.

Questions

What would a radical and all-encompassing understanding of access be like? 

What would the arts and cultural field be like if our understanding of access was radical and all-encompassing? 

What does crip love look like? How does it feel? 

Imagine a space that is as accessible as possible; what is it like? How does it feel?

Imagine a space organized by us, crips; what is it like? How does it feel?

What is solidarity like? How does it feel?

How can I act in a way that creates access every day?

How do I treat crip and disabled people? 

Do I notice how people around me are treating disabled people?

Do I think that sickness, disability or accessibility are not relevant to me?

What kinds of preconceptions do I have about disabled people? 

How to stay truly open to other people’s humanity, individuality, and complexity?

How to stay open to facing different kinds of abilities and realities?

How to make space for different kinds of experiences than my own?

How to question my own assumptions of what disabled people or experiences look like from the outside? 

How to create such spaces where disabled people feel more safe to communicate their needs and realities?

How to make asking for and receiving help easier?

How to offer, receive, and increase all kinds of care?

Do I take care of myself or the people close to me?

How to learn more about ableism and disablism? 

How to practice anti-ableism?

How are these things taken into account in the institutions I’m a part of?

How are racism, queerphobia, transphobia, sexism, misogyny, ageism, poverty, religious-based discrimination, homelessness, and the realities of undocumented people, immigrants, and refugees taken into account when creating access?

What does it mean when some people want to “get back to normal”?

Whose normal, what kind of normal?

If “normal” refers to the pre-pandemic society, why do some people want to return there?

If “normal” refers to the pre-pandemic arts field, why do some people want to return there?

What if, instead of longing to go back to “normal”, we took a realistic, open, and curious approach to the situation we actually are in?

How could the things we learned during the pandemic advance the cripping of the fields of culture and arts?

Why are the tools for creating access that already exist, not put into use in the fields of culture and arts? (see e.g. Bullivant & Lindholm 2021)

What kinds of acts does it require to crip the arts field?

On a systemic level? From the perspective of global solidarity?
Regarding livelihood? Sick leaves and absences? Contracts?

On an institutional level? 

Regarding projects?

On a community level?

On an individual level?

In what ways do I collaborate with crip and disabled people?

Do I think about accessibility only regarding the audience?

Are the projects I do, or the institutions I uphold, accessible to disabled and sick workers?

Are there any crip and/or disabled people present in the working and organizing processes?

What is an accessible performance or an event like? Who is it accessible for?

What is an accessible performance or an event like during a pandemic? Who is it accessible for?

How do I communicate about accessibility?

Am I being honest about what kinds of people I consider as my target audience?

Is access the starting point of what I do, or the last thing on my mind that I easily forget?

What is an accessible performance or an event for risk groups when we live in a world shaped by the COVID pandemic?

Do I act out of love?

Writer’s thanks & acknowledgments 

Orlan Ohtonen

Katie Lenanton

Jemina Lindholm

Juti Saari

Inna Lampinen

Wambui Njuguna-Räisänen

Aku Meriläinen

Salla Aldrin Salskov
Linnea Kilpeläinen

Nadja Leham

Milla Tengström
Marja

Queerantine group

Queer kirjoittajaryhmä / the Queer Writing Group 2022
ja muut ramparakkaat / and other crip darlings

In addition to all the support I have gotten from all the people in my life here in Finland and Northern Europe, this essay would not exist without (1) all the artists, writers, organizers, people who have been developing and furthering Disability Justice. This labor is led by QTBIPOC Disabled, Crip, Sick, Mad, Autistic, Neurodivergent, Deaf, Blind, etc. persons, collectives and communities, many of them located on colonized and stolen land; in the settler colonialist states of USA, Canada, and the UK, (2) and the work done by the people contributing to the Finnish disability and crip movement(s).

About the author

Isa Hukka is a non-binary queer crip artist, student and an older sibling living in Helsinki, Finland. They study humanities at a university, focusing on feminist theory. Hukka was born in Helsinki, although parts of them always live in Northern Ostrobothnia, Copenhagen, and Montreal. In addition to working in performing arts, they have published crip poetry in Finnish and English, in e.g. Nuori Voima, Astra, and Libero magazines. Recently they translated Leah Lakshmi Piepzna-Samarasinha’s poetry in Finnish for Tuli&Savu -poetry magazine. Hukka’s texts have been awarded in Debytoi runoilijana -poetry contest in 2020, and J. H. Erkko national writing contest in 2021. They have been a part of founding the Crip Student Organisation, Just Another Crip Group, and Crip Care Network Helsinki.

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Note 1. “Abled” is derived from the term able-bodied and minded, referring to a person that has privilege in an ableist society (compare: dis/abled). In this essay I am not commenting on any individual’s bodymind or abilities, but use it to construct a character that points at structures, norms, systems, and cultural conceptions. The word is often used within crip and disabled communities. Not all of us support using the term, but prefer other ways of understanding and naming the phenomena, like; “non-disabled”, “temporarily able-bodied”, etc.

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Note 2. In this chapter I describe a phenomena that can theoretically be named as the medical and individual model(s) of disability. The models of disability all answer differently on what disability is, and where it is produced or situated. The medical and individual model summarize the dominant way of understanding disability in many current societies. This model upholds and furthers the oppression of crip and disabled people. Disabled activists and scholars have circa since the 1960s onwards developed a model that resists the aforementioned one: the social model of disability. Briefly, according to the model, disability is a social and societal phenomena. No one’s bodymind in itself is disabled. Instead, disability is produced by inaccessibility. This crip thinking and action that I am myself also involved in, is based on a more complex understanding of disability. One way to describe it, is the political relational model of disability, developed by Alison Kafer plus others. It appreciates the social model but considers it inadequate. This model recognizes the formation of disability and ableism to be deeply entangled with other forms and systems of oppression, like racism, classism, queerphobia, discrimination against sex workers, unjust judicial systems, etc. From the political relational point of view, disability is multifaceted and has several locations. Disability lives in the realities of our bodyminds, in active political agency, and relationality. Although Kafer +other’s model has been influential and its echoes can be recognized in many crip movements and ideas, crip movements itself are not automatically academic or theoretical. Sources: Kafer 2013, Vähäpassi 2017, CDSC 2022, Piepzna-Samarasinha 2018.

Note 3.Briefly, ableism is a system of oppression and discrimination based on ability, appraising people’s bodyminds based on societally produced ideas. The roots of these ideas are deep in eugenics, racism, capitalism and colonialism. Also non-disabled people suffer from ableism. See more: Sins Invalid 2019, Lewis 2022, Lindström 2021.

Note 4. For a great definition of eugenics, see Sins Invalid 2019: 155.

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Note 5. “Crip” or in Finnish “rampa” comes from the originally derogatory word “cripple” (compare: queer). Some also use “krip”, formulated by African American author, poet, and activist Leroy F. Moore Jr. The word crip/rampa is being developed, (re)negotiated and discussed currently in Finnish contexts, and I am one of the active developers and translators who have been working with the term. I believe it was first used in Finland by an activist group Rammat Pantterit (Crip Panthers) in the 1980s. I ran into the concept in academic crip studies. To read criticism on the whiteness and inaccessibility of academia, please see for example Piepzna-Samarasinha 2018. The most important sources I haved used in developing the term “rampa” since 2020, are: The conversations our small collective Just Another Crip Group has had, Piepzna-Samarasinha (2018), Sins Invalid (2019), Clare (2015), Hedva (2022 [2016]), Kafer (2013),  Kynnys ry / Rammat Pantterit (Crip Panthers) history online, the works of wonderful Finnish artists, such as Jenni-Juulia Wallinheimo-Heimonen and McCepari, A course called Feministinen ja antirasistinen vammaistutkimus (Feminist and anti-racist disability studies in English) (2018, University of Helsinki, Julian Honkasalo) and of course all the conversations I had with other crips (in Finnish, Swedish and English), oral knowledge on Finnish crip history, and many crips’ posts on social media. 

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