Designing creative space for people with sensory disabilities* and my internalised ableism.
I am one of approximately five hundred people worldwide diagnosed with the autoimmune disease Cogan’s Syndrome after a four-year search. While I was losing my hearing multiple specialists dismissed my symptoms as mental illness. Because it’s rare, there is little ongoing research, so finding medical support is arduous. Cogan’s involves vascular inflammation of the ears, eyes and vestibular system. Over time this results in deafness, vertigo and for some also vision loss.
Chronic illness presents a diminished state of normalness of human perfection. It takes time, but when we embrace our disability, we embrace the innate understanding of being fully human because there is nothing natural about human perfection. I believe our obsession with emulating the norm via our ableism comes from a culture that commodifies everything with promises of perfect health, beauty, popularity and happiness. Personally, this belief system, on top of daily disability social trauma, inevitably makes me fall into the trap of deaf shame, ADHD shame and rare-chronic-disease-shame.
In the Sync program, I was excited to share an online disability arts space and see radical acceptance of disabilities in action.
With hearing and vision loss, the medical industry is our first and often only reference for our ongoing disablement. Though we may need treatment to slow the loss, it’s equally essential to develop radical self-acceptance, purpose and community. For disabled individuals to thrive, we must build disability pride in conjunction with our other pride identities like feminism and find our communities.
“Without community, there is no liberation.“* Lourdes’s proposal of community-in-action is evident in the collaborative community of ceramic production. Everyday shared space, equipment, tools, skills, and machinery are common and celebrated. In the Sync program, I was excited to share an online disability arts space and see radical acceptance of disabilities in action.
Before my deafness, I witnessed social oppression as a child of gay parents who campaigned for women’s rights. I didn’t understand why my two mothers could not marry or be listed as next of kin at hospital or why they missed out on 45 years of wedding anniversaries. I heard them telling themselves that a wedding was unimportant, and the piece of paper didn’t matter; this was how my family internalised homophobia.
At the end of 2017, there was a referendum in Australia on legalising gay marriage. Before my mother died, she was devastated when she saw the mixed results of the 60/40 ‘yes vote’ referendum mapped out in our suburbs. As my mother was dying from Leukaemia, we had to get their permission for marriage rushed through the bureaucratic channels. They had two days in the hospital for palliative care, and she was gone. We counted ourselves as lucky as their marriage ceremony was one of the best moments of our lives.
The insight I gained from this experience was how can we tell the difference between our intrinsic wants and needs and internalised oppression if something has always been prohibited? Seeing the self-protective act of denial in action was revealing, as it showed how we internalise sexism, homophobia, classism, racism, transphobia and ableism.
When my son was a baby, he couldn’t sleep for more than two hours and bashed his head repeatedly. Paediatricians had low expectations, and after five years, he was diagnosed with Autism, RL sleep disorder and later ADHD and dysgraphia. Being a carer for my neurodiverse son taught me that focusing on your “deficits” to normativity is toxic and unproductive (a lot of ABA therapy is now seen as abusive by many Autistic adults). Watching my son, who now plays in a jazz band and is studying engineering, I learned that people with Autism and ADHD are superb specialists and living with a disability is about adaption and innovation.
We habitually conceal disabilities to pass as normative so that we don’t make other people uncomfortable, but this discomfort includes ourselves. When we can no longer pass as normative, our unconscious stigma directs us to withdraw for safety or endure daily disability “outings”. But we can use this to develop disability pride. Only a tiny proportion of people in the world that have a disability identify themselves as disabled due to stigma. And our confirmation bias includes ableist behaviours such as not socialising with other disabled people.
Watching my son, who now plays in a jazz band and is studying engineering, I learned that people with Autism and ADHD are superb specialists and living with a disability is about adaption and innovation.
For myself, the cumulative exhaustion of pandemic ableism caused me to withdraw from my friendship groups after the combined rare-disease medical ableism and daily deaf communication barriers with lip reading and masks. Ableism often comes from the illusion of personal choice. We appear to choose to withdraw from social activities when in fact there may have been a difficulty communicating in crowds and immunosuppressant vulnerability during Covid.
My approach to art it is much like a science experiment. While training in ceramics during my illness, I fell passionately in love with the chemical reactions in ceramic glazing. Now I want to experiment, collaborate with my and other people’s and artists’ experiences of being sensory disabled.
The Sync Program has given me the clarity and strength to move forwards and great tools to understand my decision-making process and the sense of worthiness to ask for help. It has allowed me to think big and see what’s possible—using my technical knowledge in ceramics to build an inclusive, collaborative environment for deaf and blind people—providing social connection through a cultural centre for both ceramics production and contemporary art collaborations as a place for disability creative excellence. I want to show people an example of what they could be capable of after, and during, the hearing and vision loss with community and empowerment.
Kirsty Collins, 2022
*Sensory disabilities refers to blind, deaf and the spectrum of deaf-blindness.
* Lorde, Audre. “The Master’s Tools Will Never Dismantle the Master’s House.” 1984. Sister Outsider: Essays and Speeches. Ed. Berkeley, CA: Crossing Press. 110-114. 2007. Print.
(One of the best speeches ever written!)