Nothing About Us, Without Us:
a declaration of relationality in the context of our creative contribution or,
doing things the way we do them
Autistic self-advocacy – “nothing about us without us” – reminds that autistic people must be included in research creation about autism/neurodiversity. Relational support involves human and non human interaction. Objects, beings, environment become a part of understanding neurodiverse perception and movement that is otherwise pathologized in our culture, subjecting autistics to normalization therapies and exclusion. Within an artistic practice, conditions for relational support and collaboration emerge with attunement to neurodiversity as a mode of existence. In other words, neurodiversity is not simply a difference that can be measured against neurotypicality. We must move beyond this binary in order not to reinforce the concept of normality and autism as “pathology.” We must rethink the way we relate-with. Neurodiversity is, put simply, always in relation with the world.
Nothing about us without us is therefore a declaration of relationality. It challenges the production of knowledge without autistic people that situates autistics outside of the positivist frameworks where autism has been initially authored by non-autistics; where it makes objects of autistic people and their experience. It challenges the tokenization of autistic “voices” - be they speaking or non-speaking - on the sidelines of research initiatives about autism. In this collaboration with Adam, we understood that the very nature of research production works against the way experience and relation are activated in our lives. Typically, relaying experience requires us to explain, in book-form, writing and speaking, rather than move-with the other forms that emerge from our lives together. It asks about clarification of authorship, and specifics about support, for it seeks to keep separating the intrarelationality of all life. These research methods promoted by the neoliberal university, particularly with its adherence to book-form and the utilization of arts-based work for data and interpretation, have become somewhat antithetical to our ways of working and living together as movement, experimentation and improvisation always move in relation. This is key because Adam doesn’t want to explain autism and experience - to be situated as “other.” It is key because we work in many modalities, some of which we invent ourselves. He wants to teach through relation and movement. He wants your patience, attunement, openness to new ideas, and yearns for change as his chapook of poetry also suggests: In Way of Music Water Answers Toward Questions Other Than What Is Autism. Also:
“I want to say that I am proud to be autistic and the ways to freedom think with autistic people questioning the need for rights that make the world a better place.” - Adam
Ways of movement, as in hand-flapping, stick-waving, toy-tapping, ticcing, humming, jumping… are the creative becomings with the world that are currently relegated to the site of pathology. Understanding movement does not only belong to neurological study to locate sites of impairment, and we tend to avoid impairment-thinking as it has become overly neurotypical, using language such as “the right pathways” and “normal” or “appropriate” to describe the ways in which our neurological makeup suggests we are supposed to all move, communicate, feel and be with one another. Rather, we prefer to attuning to the relation itself. For us this is both pragmatic and creative, and teems with multiple relations (including the non-human) that potentiate new ways for living.
With a declaration by scholars that invention is necessary to change the way we live within the world because our current systems and practices are destroying life itself, we also know that to be autistic is precarious within these systems. Existing ways of care and support seek economic efficiencies that are breaking autistic people and their families. The fabrication of the normal, “human” body takes precedence and supposedly controls all other forms of life. Lives are at stake. Care and support are overly professionalized using the pathology paradigm to control autistic bodies. Autism is characterized over the course of history as clinical pathology for the purposes of eradicating autism - autistic people - from society. Oppression is enacted in remediation and segregation practices that Adam and I have had direct confrontations with over the course of 17 years. In order to avoid these systems, we have had to find our own ways to survive within and also outside them. We have learned to recognize our own inventive and creative ways, our own “forms” of living.
This dissertation enacts (in the sense of activation rather than enacting from above) inventive ways of living through movement, thinking, study, relation, which also happens to be our art in order that Adam is central to this work, and also, my support and contribution is also present and a way of making learning accessible in a system that currently excludes neurodiverse ways of learning, moving. Finding ways in which we actually work and move together is important for sharing and disseminating what doctoral level work calls “new knowledge.” Natalie Loveless notes that “at the doctoral level, artistic production is no longer solely an object of scholarly inquiry but is itself a legitimate form of research and dissemination, which in turn raises questions regarding the book-length monograph as the only legitimate product of a dissertation in the arts and humanities” (Loveless, 2019, 13). It has taken Adam and I time to realize that the production of yet another object would be counterintuitive right now to the way we study, and for our proposition that invention lies within movement and relation itself. Where typing and language-production can be a laborious act especially for those who type, and as Adam notes often, this way of producing “new knowledge” in the traditional form is already excluding many from participation. The photos of our work in this website show moments of a richer relational process. We disseminate this knowledge through intrarelational, neurodiverse movements, which also includes our way of writing together - this involves relational proximity, trust, touch, contrapuntal movement. (Please note that the use of this term is deliberate as we are leaning towards changes of terms around the medical imaginings and also, around “divergence” that reinforces the concept of normality). There is growing literature on autistic language and rhetoric (see Savarese, Rodas, Yergeau), and we extend this research towards decolonizing autistic language in the sense that it moves with haptic, affective-relational expression - an expression deemed “behavioural” by psych-science and targeted for eradication in clinical practice. We believe that this combination of Adam’s unique way of writing - what has been coined as autistext (see Savarese), works exceptionally well when combined with artistic-movement-relational that we have rendered our art-life. Lygia Clark writes: “Previously, man had a discovery, a language. He could use it his entire life and thus feel alive. Today, if we crystallize into a language we stop, inexorably. We totally stop expressing” (in Rolnik 25). If language signifies “reason” and “mind,” and autistic language is deemed repetitive, echolalic and thus unaware and mind-less, decolonization is necessary for neurodiverse contributions. Other ways of expression need also to be valued.
What you see in the site are photos of larger movements, practices, study. Unless you join us for a few days at The A Collective where we do this work, this relating, this website, we acknowledge, may appear like an archive rather than a share of our collective work. We hope you will view it in the spirit of the anarchive: “The anarchival is that which breaks free of the archive, often, though not always, from within. Maybe the anarchival is moving dance moves differently. Perhaps it reads at odds with the authorized version. Or maybe it departs from established techniques in making art (whatever ‘art’ might mean). It never just relies on the same old techniques” (Murphie, 2016, 41). Christoph Bruner writes: “The anarchic share is a share of and a belief in the world. It is a sharing of a situation that obliges every force that is becoming part of this situation to share its very singular mode of co-becoming. Only in sharing does the universe hold together” (Bruner, 2016, 65). I acknowledge that my lack of skill at this time as a website designer has limited the potential to engage you in a more interactive way, but this is meant to be a share. We invite you to use it as such for your own work. Use it to move, create and share with us and others. We ask in your classrooms and lecture halls that you invent with us with rubber bath toys, sticks, therabands, movement… towards thinkingfeeling relation. How does it feel? What happens within a mutual relation? Feel how movement begets movement. Are you trying to control it? Attune to the invisible forces that shape the relation as it is happening. What assumptions influence the way we relate? How does this shift the ways you now think about “support,” and studying together? What forces might be hierarchical and forceful in an oppressive sense? What might you have to shift in the way you arrange your space, allowing for bodies to be as they are? Adam asks: “how can art think with neurodiversity?” The question has lead to more about movement, relation and support which befits an artistic/improvisational/material movement practice. It extends beyond the important communication device and writing to the much needed focus on relation and movement that is often missing from discourses about autism, self-advocacy and authorship. It moves beyond the table, chair, the book…all of which have movement, support, and relation around them.
I’ve always been an artist, studying art since high school and in my undergrad at University of Toronto and I am continue to use artistic practices as an interdisciplinary researcher. My previous work as an artist and curator of contemporary art quickly turned towards autistic artists in 2005 when I founded The Autism Acceptance Project to work with autistic artists and exhibit their work (in 2006 and 2007). I was not interested in what work by autistic artists could contribute to knowledge about autism as it is often co-opted by those who produce academic research, but for the work itself as expression and for deeper questions about relation, movement and life itself. I bemoaned how autistic art is frequently characterized as the result of “genius” “giftedness” and how many have used autistic art to enfreak autistic subjects (as in the work of Oliver Sacks). Nevertheless, it became apparent during these exhibitions that the interpretive lens that is pathology was going to take our lifetimes to overcome (you can see some of the publicity outcome of our work at CBC documentary Positively Autistic which you can still find here: https://www.cbc.ca/player/play/1289899998.). So we have more work to do beyond this dissertation, including, perhaps, a book (but maybe not a traditional book).
Adam is an artist from the time he was young, making water “stim” paintings, collecting, moving in ways that artists already acknowledge as aesthetically-inclined as in repetition, musicality of it, his interest in pace and timing of moving images and bodies, collecting objects, poetry, and the rhythmic relationality of movement. It happens to be that Adam’s poetic explorations with art have been important for thinking about the body, diversity, outside the pathology paradigm. Honouring Adam’s desire for movement - “Thinking is a feeling through a body that is always moving,” he writes - he has invented, with support at The A Collective and with me, new ways of study and contribution including the reconfiguration of space, moving while learning, and entering new fields through themes that have been typically problematized in our culture such as “maladaptive movement” and “intense interests.” Without the space and time to explore and improvise, we would be confined to tables and chairs and clock time. At The A Collective, we explore other ways of doing things the way we do them.
As Adam himself grew and as he also began to type to communicate with my support, we recognized the intrarelationality with objects, movement, and a sensitivity to affective cues, those very cues neurotypicality unlearns or ceases to register as it turns towards standard ways of language and knowledge-production. Attuning to expression, movement that is activated within the affective milieu, “collaboration happens by managing movement together,” writes Adam. These collaborative movements are the artistic process itself. We are therefore hesitant to explain this work through language alone - at least a language that is efficient or grammatically correct - and as a way that autistics or other non-speaking people must prove their competence, as intelligence is rooted in this performance of the speech act. The history of intelligence is long and complex (see C.F. Goodey and Henri Stiker). Put simply, it is fundamentally humanist. We propose these ways delimit the creative potential of living artfully and of thinking of our relation beyond the binary ab/normal; a way of making art that is the way of our life itself. This way is always improvisational, always a process of moving, living, studying together.
“Landings are different than flying thinking. I want to use questions to think about talking like answering, keeping my thinking to the way language really opens my landing of thought. I am eating language all the time but I am thinking that asking questions is language’s strength and my language irritates some people. But I am strong in it. I really can always rally words like welling waterfalls of wanting roaming thought and I am easy in thinking talking words but I am always having trouble saying them.” - Adam
Adam’s ways of landing and moving thought, like the movement of our bodies, are landing and flying, and a study in relation and movement befits improvisational expression. His writing so connected to movement necessitates a movement-artistic based practice as typing is difficult; it requires sustained attention to the keyboard where the affective lures are plenty and where the body must align in one long sustained movement. So we can’t privilege the written word when expression is as important. We attune to what emerges in the room, in interests, in movement - which become the conditions for our way of study and creation. Sometimes Adam’s movements are supported by my counter-movement, or a touch on his back. His movement affects the rhythm and pace of my movement. Our roles are blurred in the indiscernable inbetween of sharing movement and experience - the intrarelation. The intrarelation suggests our agency collects with others - the human and non-human (what is also referred to as transindividuation or morphology). This acknowledges that we are never independent, but rather, intradependent. Agency emerges within a network of multiple affects. We are always sharing ideas as well as hands and body movements - moving toward ways of actualizing agency that is always, as Erin Manning says, “more than one.” Nothing about us without us, then, includes an extended hand, a hand flapping or holding an object, multiple hands, fists-up, and most importantly, a call for collectivity - a shared relation.
In my life with Adam and as his mother, supporter, collaborator, I found it difficult to write and do this work without him - to write the traditional “momoir” of complaint, and proclaiming the burden of care of an autistic child that was so prevalent at the time of Adam’s birth. I was active in this area of regarding autism not as a burden but as a joy as I experienced Adam as my son (my Joy of Autism blog which began in 2003 was highly criticized at the time) . The burden was inverted in this blog, addressing the exclusionary school systems and attitudes that began to confront us when Adam was diagnosed at 18 months, and earlier, when others suspected something was “wrong” with him. This life and practice began back then - when I drafted manuscripts left unpublished - because I knew that Adam might want to participate actively in this artistic contribution that expresses otherwise; expression as a way of movement that expresses thinkingfeeling in his own writing, a way of writing (that also always moves) that I feel is far more poetic, open and inviting than my own.
As artist Lygia Clark suggests, our life, our artworking, is our oeuvre. It is a lifetime of thinking, studying, feeling together. Pragmatically, this way of thinking (I hesitate to say “approach” for it might give way to a methodology which can be reductionist) has given Adam access to education and also, a way of proposing other ways of learning and studying outside of restrictive educational spaces and curriculum. We have not only learned something about what interests Adam, but also how he wants to learn, and this gestures towards a necessity for autistic people to create educational programs and curriculum. Our work pushes the edges of what we think we know, what is being taught and how, what we think we know about “accommodation and inclusion”, and asks for neurodiverse contributions and ways of rethinking pedagogy. As Adam has worked on this with me for several years now, he begins to make his own work with my support and the support of others.
This work addresses neurodiversity, identity-thinking and the production of subjectivity, collaboration, art-as-research, relational and mutual support, neurodiversity and artistic process, and presents an alternative and affirmative-activist mode of contribution. As a collaborative artistic dissertation, it includes photos of our process and work, an exhibition film, an upcoming exhibition, some writing (such as this), and Adam’s chapbooks of poetry. This is where we are at as a collective research endeavour. And there is always more to come.
Christoph Bruner. Submerging as the Anarchic Share. The Go-To How-To Book of Anarchiving. SenseLab, 2016.
C.F. Goodey. The History of Intellectual Disability: The Shaping of Psychology in Early Modern Europe. Ashgate, 2011.
Natalie Loveless. How to Make Art at the End of the World. Duke University Press, 2019.
Andrew Murphie. Where Are The Other Places? (Archives and Anarchives). The Go.-To How-To Book of Anarchiving. SenseLab, 2016.
Julia Miele Rodas. Autistic Disturbances: Theorizing Autism Poetics from the DSM to Robinson Crusoe. University of Michigan Press, 2018.
Sue Rolnik. Molding a Contemporary Soul: The Empty-Full of Lygia Clark. http://caosmose.net/suelyrolnik/pdf/molding%20_john_nadine.pdf.
Ralph James Savarese. See if Feelingly: Classic Novels, Autistic Readers, and the Schooling of a No-Good English Professor. Duke University Press, 2018.
Henri-Jacques Stiker. The History of Disability. The University of Michigan Press, 2009.
Melanie Yergeau. Authoring Autism/on rhetoric and neurological queerness. Duke University Press, 2018.