Artists with OI: Jenni-Juulia from Finland
Interview with Jenni-Juulia Wallinheimo-Heimonen
Who are you and what do you do and in what way has OI affected your art?
I’m a multidisciplinary artist and an activist making political disability arts. My passions are structural violence, aesthetics of assistive devices and issues related to women with disabilities. My background is in textile arts but nowadays I also use hard materials and make sculpture, installation, video and performance too.
I come from a family, which has a history of four generations of visual impairments from my father’s side and a history of four generations of brittle bones disease from my mother’s side. As a female artist with two kids (8 y and 11 y, both with OI) my everyday life is typical balancing between work and parenting. When fractures occur to kids, Grandma or me, we just change routines to well-tested practices to continue life as normally as possible. Our lifestyle that physically privileged people often want to see as adaptation, extreme courage or surviving, represent for me refined and cultured disability that has passed down from one generation to another.
What projects are you currently working on?
In 2019-2021 I’m making “Empathy objects” with three years funding by Arts Promotion Centre Finland. They are portable street artworks in dialogue with the environment about thoughtfulness, unconscious needs and our dependencies on other people. For example “Poverty jacket” has a tablet on its back, screening a video about how it feels like to be a poor wheelchair user in the jungle of bureaucracy. The film screening on the back is the one below.
The jacket is connected to a headpiece resembling the measurement cap of the electroencephalogram that imaginatively turns the user’s thoughts into video. In 21st century, Western and Scandinavian poverty is often not outwardly visible and cannot be inferred from clothing or phone model. I wanted to visualize the inner feelings and for humour, animals play the role of authorities.
Then in September one of my short films, “Reflector of Living Will” will be screened at Helsinki International Film Festival. It tells about Maria, living with arthritis who gets tired of the rehabilitating attitude of her new care robot and reprograms it to fulfill her true needs.
Please tell us how you became part of the film festival about disability!
July 2020 was second time for me to take part to Easterseals Disability Film Challenge that actor Nic Novicki launched 2014 in response to seeing disabilities underrepresented both in front of and behind the camera. After spending the spring isolated, home-schooling the kids I wanted to challenge myself by making a 5 min short film in five days, from the script to final editing. As the given theme was “My Story” and due to COVID everything had to be done at home, I invited my Mom to talk about OI with my kids. The result was a colorful mix of archive photographs and fracture memories titled: “Great-GrandPa looked like E.T.”
Why do you do what you do?
I want to do my part to change the world. Globally, even in Finland, people with disabilities often don’t understand what kind of rights we have. Discrimination produced by culture, by human perceptions and inaccessible environment runs so deep. Charity and human rights often get mixed up even in decision-making.
What’s your scariest experience related to your work?
In a welfare country (or what Finland used to be) I’m most of the time biting the hand that feeds me. The scariest thing is to criticize authorities and services which I am depended on in many ways. On the other hand, my experience is that most of the time, bringing up nasty things leads to better decision and understanding.
What role does the artist have in society?
For me, art is a means of communication. A visual way to tell about things that happen in the margin. As a disability artist I would like to change the perceptions of disability. I’m especially intrigued by the culture of persons with disabilities who are born with their piquant features. I am worried about, what will happen if we eliminate inborn disabilities in the future by genetic engineering and prenatal screenings. If people become disabled mostly later in life, disability culture will change.
What is your dream project?
To be curated to a well-known international exhibition. Break boundaries between disability arts and mainstream. But without giving up my crippled esthetics and disrupting themes. Like my statement which is: “Why aren’t rare diseases protected on the plea of biodiversity?”
Do you have any messages to readers?
My message is in the last sentences in the film where we are taking a cast shower on the floor with my Mom and kids. We count that 8 people out of 9 born in our family have inherited OI. The only uncle who was born with stronger bones drank himself to death before his 50th birthday. For us living with OI means strength, not weakness. My whole career is based on it.