Cripple Poetics: A Love Story
by Petra Kuppers & Neil Marcus
With Photos by Lisa Steichmann


Who is Neil Marcus?

Neil is an icon in US disability culture. In the 1980s and 90s, he performed his stage show Storm Reading over 300 times all over the US, the UK and Canada. Parts of it were on Maria Shriver’s Sunday Today Show. Neil has also written and performed other plays in the SF Bay Area, and is a frequent guest in Butoh and Contact Improv Festivals. His poetry has found its way to many people, on the back of fridge magnets, policy statements for NGOs, university reading lists, and many people’s private stash of important things to know about life. Neil is still recognized in the street for his role in an episode of ER. Mainly, though, Neil engages in his own street theatre show, singing, clowning and performing in the everyday.

More info about his work, his influence and his life can be found at these sites:
out of date, but gives a sense:

And this University of California Berkeley site features his whole life history, as part of a disability history archive:

Who is Petra Kuppers?

Petra is a disability culture activist, a community artist and an Associate Professor of English, Theater and Dance and Women’s Studies at the University of Michigan. She grew up in rural Germany and has hitchhiked all over Europe, sometimes with her wheelchair. She has worked as a foreign correspondent for horror movie magazines, as an art worker in hospices in New Zealand and Wales, as a laborer in a car factory, as a nature warden’s assistant in a Welsh National Park, as a coordinator and reviewer for Film Festivals in Cologne and Paris, as a singer in cabaret night clubs, and as a visiting artist in a bird sanctuary. She enjoys her public duties as a socialization provider for doggies who have never been petted by people in wheelchairs.

She is also Artistic Director of The Olimpias, a performance collaborative which investigates disability art and culture.
She writes about her genre-crossing work:
‘I’ve been a dance and performance artist for many years, but I only relatively recently began to see myself as a poet. It happened after a conference paper: I had danced my paper with a collaborator while someone read out my words. Afterwards, in the restrooms, someone came up to me and told me that she remembered a poem I had published years back in Women and Performance (part of the script of a show). I had never considered the performance detritus, all the wonderful words that emerge as part of my performances, as poetry. I love reading poetry, and have written many essays about disability culture poets and their work. But now, as my body is becoming more tired, I am glad to find poetry performance a way of extending my movement art practice. Poems are for me movement scores for vocal cords, lungs, diaphragms, the sensuous surfaces of the body’s insides. When I read a poem, I dance.’

As we are sitting here, trying to come up with a FAQ, we instead keep coming up with more and more questions we want YOU to answer for yourself as you read our poems. So we collected questions, and came up with some beginnings of answers. We wrote them together, and then Neil added some additional comments to give space for the particularities of his voice.

How do different forms of embodiment leave traces in writing?
How do typographic differences shape your reception of the text and its personae?
What are traces of the electronic/traces of the physical?

Our written and spoken languages are different. Petra writes with a dancer’s attention to movement and musicality: she enjoys the touch of her fingers on her keyboard. She is a non-native English speaker. Her German mother-tongue and her Welsh accent leave traces in her writings.
For Neil, writing and speaking is laborious, time-consuming, tiring. Neil writes direct and short, with grammatical and spelling differences that allow him to short-cut language conventions and present his expression. He also needs to move in order to speak: his whole body is convulsively involved in the production of sound. He dances in order to speak.
Taking on the embodiment of an artist a dancer a space traveler, a poet creates new landscapes for disabled people to occupy.
Pain, more specifically, physical pain, is very much a taboo subject. Not a subject that is well understood or talked about publicly. Addressing it can be very helpful to vast numbers of people. Love is not  separate from our physical ‘frailties’ and aches. Must be addressed.

Is touch a function in language?
Is pain unrepresentable in language?   
Is love in words?

Touching a keyboard, touching skin, touching sounds: both poets’ form of embodiment makes them aware of touch. This heightened awareness to the tenderness and costs of touching emerges in the poetry. Pain is the theme of many poems here, and pain also creates blank spaces or time-outs in this narrative. Pain, love: what these words mean is unclear, and Cripple Poetics improvises in the swath of these grand words.

Touch is a very necessary and overlooked part of much of our lives. Presented in language it can quickly become a reality. Writing about how disabled people desire touch is again breaking another taboo.

Mobility: who moves, how, when, where, to what effect?
How does distance shape desire?

Many poems in this collection speak about mobility, movement, and about the many different ways we can conceive of travel: in one’s ear, in one’s mind, in one’s body, in another body, across time and space. And yet, many poems also speak about immobility, about physical solitude and rest. Different communication strategies, from traditional poems to Internet Relay Chat, from essayistic meditations to chatty emails, chart how mobility can happen. All of the pages in this book were part of the many hundred emails the poets wrote to each other in their courtship.

What does water signify throughout the collection? What about seeds, about disabled country, dance, etc?
Fluidity, emergence, the formation of disability culture and the impossible task of imaging ‘disabled country,’ the tension between individual voice and a political movement – these are themes in Cripple Poetics, and they are visited in many different forms.

More general questions:

What is disability culture?
Disability culture is a movement shaped by people who want to take pride in their differences, see both political and aesthetic potential in human diversity, and want to change the world. We see Cripple Poetics as a part of this movement, and we want to show non-disabled and disabled people how rich our lives are, not in spite of our disabilities, but with and through them.

Can poetry be political?
We think poetry is a great medium to express what cannot yet be thought and spoken of in the language of the everyday. To publish our poetry is for us a political act: disabled people’s loves, their sexuality, their embodiment, their enjoyment of their differences are all still silenced or invisible in our culture. Cripple Poetics offers an alternative vision of rich disabled lives, without invading our privacy.

‘Cripple’ has been a very loaded word. I think poets do a great job liberating its oppressive  connotations. Freeing it makes ‘cripple’ lead and soar.

How does your disability affect your everyday life?
Neil has dystonia. This means that he has involuntary muscle spasms (in its effects, similar to cerebral palsy). He uses a powerchair, and he has a speech difference which means that people have to listen closely and attentively to what he says (his voice is on our disabled lilacs video, see below). He uses a computer, and has adapted his living environment to his needs. He is a dance artist, and communicates much through movement, touch and his gaze.

‘my body is my temple, the door to my soul.’,one answer to questions neil frequently answers such as what is it like to have a disability and how do feel about it?

Petra lives with fatigue and pain. She switches from a cane to a manual chair to a power chair to a scooter as her changing needs demand. Swimming and dancing keep her afloat. She was the first wheelchair using dance academic in Britain, and has worked with community and professional dancers for over twenty years.