A Ritual – moving through ‘Off and On’, 2004

The dance unfolded for me from a very young age. My father’s Parkinson’s Disease seemed ever present. I don’t remember a time without it. In my childhood, the realization and experience of the emotional challenge of his condition was preceded by an intensely inquisitive period, where symptoms in his body became visible and captured my attention.

The environment I was raised in was supportive of a consciousness of movement. My mother, Gertraud, is a dancer and teacher herself.
When Herbert’s hand started to tremble, his gait started to change, his limbs began to move as if their task was to defy gravity and efficiency, I became very curious. I wanted to understand what motivated that strange dance.

With time, my awareness of many people’s negative reaction to this unusual body language strengthened my desire to make these symptoms simply go away. I followed an instinct for touch when I asked my father to lie down on the living room floor and to take ‘body’ time before going for family dinners. I tried to calm his nerves by talking him through deep breaths and by touching his twitching limbs until his body movements appeared ‘normal’ and we could proceed to go public. The calm usually didn’t last through dinner, but he played along with my ritual.

One day during my early high school years, Herbert decided to hand out flyers for my mother’s dance studio in front of my school. I was in my classroom as a friend came up to me and said:
‘There is a crazy person with a red hat dancing in front of the school handing out flyers. Is that your Dad?’ Without thinking I said, ’No, I don’t know him.’

Wow, I had just disowned my father. I felt so angry and ashamed.
My mother relieved me of some of the burden. She understood.
At that time my friend calling my father’s symptoms ‘a crazy dance’ was devastating for me. Today I am fascinated by that prophecy, at times humored by the image. Since I have come to create ‘crazy dances’ for myself.

There was much to process. My brother and I longed to talk more directly about our experience and confusion of having a sick parent. I was about 6 years old, my brother 10 when Herbert got diagnosed. On this day, approaching 80 years of age and living with the first symptoms since he is 35, his life defies all Parkinson’s related odds.

Throughout the years the altered language of my father’s body has greatly shaped my intuitive understanding of movement perception and execution. I instantly feel an physio-emotional relatedness to people moving with PD symptoms. It made me realize how much deeper one connects with a person’s way of moving than with the mere familiarity of their physical appearance.

Flamenco, my mother’s chosen form, has manifested similarly in me. Flamenco’s dances, an evolving aesthetic that emerged from an oppressed nomadic people. Imitating, mocking, abstracting and expressing realities about living under imperial domination. A way to resist, defy, gather strength and sooth the pain through sensuality and power in moving?  In my way I could relate. Dance as a practice of freedom. Of owning my body.

There is a grave difference between choosing to dance and ‘being moved’ by a symptom. Growing up with a loved one whose struggling body is being involuntarily guided by Parkinson’s way of expressing was such a shaping experience for me, that it made sense when it needed to manifest artistically in a dance.

In 2002 Herbert’s state of health worsened and an urgency to come to terms with things gave me the spark to bring my feelings and ideas into the studio. Researching, creating, listening and performing became my ritual to exorcise the fear of getting PD myself, to deal with the consequences it’s second hand influences had on me and to find empathy and relief in ‘moving’ through it.

I called it ‘Off and On’, the medical terms for being in a frozen state (unable to move) and in dyskinesia (uncontrollable movements of the muscles/limbs).

The dance started forming itself around imitating symptomatic movements I have absorbed from my father. I made space for embodying a state of being where the mind does not have full control over the body. It was about allowing a body memory of being my father to emerge and direct the movements. I also needed to leave enough space to improvise, which helped me access this memory.  I added a physical constraint by using a rubber belt to strap my arm up in the air next to my head for the duration of the piece. During the dance I cope with this restriction and connect to physical and emotional realms of the struggle between control and surrender. Rehearsals were difficult and painful. I spent a lot of time just imitating his gait during an oncoming ‘off phase’ for instance. Watching videos I made of him over and over. At times I seemed to loose awareness of my choice to move freely. Scary to be in this liminal unknown. Am I making myself get Parkinson’s. Can I drop it after rehearsal? For many years certain patterns of my father’s way of moving, like the energetic, out of control swinging of the limbs, the detailed movements of the fingers and wrists etc. have already made themselves visible in my dance choreographies. The movements were already in me, I just needed to make a structure to let them emerge consciously.

New York experimental composer Doug Henderson was open to collaborate and create a score for the piece. Through his insightful, interested approach he created a world of sound that, equal to the dance, evoked an internal environment that carried me, gave me space and guided me through these states.

The piece premiered for Movement Research( an organization for experimental performance) at the Judson Church in New York City in October 2003. The audience was non-Parkinson related. I was finally able to share and fully express what had been brewing for so long. However, I did not, at that time, make the audience aware of the origins of the work. In that context the dance was perceived as just another way to experiment with a body shaking, stiffening. With spasticity in motion. Other choreographers, like Meg Stuart and Rose Anne Spradlin have introduced such languages into art consciousness before.

My mother sent the Judson Church video to Mary Baker, President of the European Parkinson’s Disease Association (EPDA) who saw it and invited me to present the piece at the 2004 EPDA congress in Lisbon, Portugal.
Interested and hesitant I agreed. The pre- performance days were nerve wrecking. What to expect performing in front of my father, patients and caretakers. Could they relate to my body doing this? Would they be offended by my ‘artistic’ expression in Parkinson’s Disease?

After a moment of deadly awkward silence at the end of the performance, my father made it onstage to give me an emotional embrace. I heard applause and felt great relief. The supportive feedback of many patients, caretakers, doctors and scientists was unexpected since I was a young healthy woman embodying states of different abilities. I expected people to feel offended. Some Neurologist even felt comfortable speaking and asking me about symptoms, experiences, treatment as if I was a patient without the doctor/patient hierarchy boundary. My father in a quiet moment told me that he was shocked by how he saw himself moving in me, by how much his life seemed to have impacted mine.

From there I was swept into continuing to perform ‘Off and On’ for several years, swept into sharing a ritual of defying my fears, of resisting the norm, of acknowledging struggle and of experiencing beauty in all aesthetic possibilities that a moving, living body has to offer.

I was invited to perform as a ‘speaker’ at different Movement Disorder Congresses in Oslo, Sweden; Berlin, Germany; Glasgow, Scotland and Italy. There were no other models of including a performance in a series of presentations. The last performance happened at the World Parkinson Congress in Washington D.C. in 2006 for a mixed audience of two thousand people. An overwhelming experience for a performer of the experimental kind. Dr. Oliver Sacks and Michael J. Fox were the speakers before me and held the dual realities of theory and experience of Parkinson’s between them in a moving way.

Mr. Fox expressed to me how he saw himself reflected in the dance, in my movements and struggle. Are we all reflected in each other? When he walked away from me I cried for in his gait and spirit I saw my own young father reflected in him.

This dance has connected me to aspects of science’s and medicine’s view on body mind. Many people I have met are passionate about relating art and science in a tireless way. Dr. Gudrun Diermayer and Dr. Peter Gordon of NY Columbia University opened their research and classes to me in generous ways. Throughout this process my deepest learning and joy was in meeting people with unique bodily expressions and symptoms, with unique stories and ways of being and creating. People who have in common daily life in the context of normative oppression and abelism.

My gratitude to Doug Henderson, Mary Baker, Lizzie Graham, Sharon Stone, Eli Pollard, Heather Mc Tavish, Rudi Derkits and the late Tom Chomont and Samay Jain for their support and their tireless work in their field, as well as my father Herbert Maar for what his disability, humor and living is teaching me. My mother Gertraud Maar, for her support and dedication to her work.