In 2000, Diane Maroger, then a young film-maker, met Californian poet and disability activist Cheryl Marie Wade as part of a film project. She shot dozens of hours of footage documenting the disabled artistic community in Berkeley that she encountered through Wade. at the very start of the 2000s. The group show “Cheryl Marie Wade, Queen-Mother of Gnarly” draws on the images of this documentary that went unfinished and whose unedited footage reveals a story that is more present than ever.
LUCIE CAMOUS Twenty-five years ago, in your early thirties, you went to Berkeley, California with an aim to make a film entitled Du côté des femmes invisibles. Voyages dédiés à une enfant of which the English title was, at the time, Visible Women—Travels Dedicated to a Girl-child. That’s where you met and filmed Cheryl Marie Wade, a Californian disabled poet and survivor of incest. She was part of the Berkeley art scene in the 1980s, which laid the foundations for Crip Culture, based on the porosity between activism, poetry and performance. For you, this was a political, artistic and personal quest. What made you cross the Atlantic to meet her? Upon leaving, did you know exactly what you were seeking?
DIANE MAROGER I did, because I had started reading disability culture literature. In 1997, friends who were professors in the field of critical theory in the US sent me The Disability Studies Reader and other books edited by one of their colleagues, Lennard Davis, who is CODA (child of deaf adult). He was then laying the foundations of a disability studies department in Syracuse, not far from the university of Cornell. And in this book, there were several essays and poems by Cheryl Marie Wade. Reading them was astounding. Around the same time, I had come across Irish fine artist Mary Duffy, who then made nude video performances and photographic installations with pre-recorded texts read by herself. Both of these artists stood against the ableist and misogynist gaze, which denied them the right to present themselves as women because their body, like mine, was deformed. I realized—as I first discovered them as artists, and then when I met them in person while location scouting for a film—that I strongly needed to learn with them how to exist on my own terms. And I wanted to show audiences who they were in a film that could reach beyond the disability community. The question of our desire and agency [not being legitimized] was not seen as an actual issue by feminists at the time. Disabled women’s position and claims in the face of societal norms are indeed not identical to those of able-bodied women as, in addition to patriarchal oppression, they are subject to ableist norms that deny our reproductive rights. Some of us fight to have access to sexualization and parenthood, unlike feminists who challenge the pressures to become mothers and be attractive…
LUCIE CAMOUS What was it like to meet Cheryl Marie Wade? Why did you choose her work in particular?
DIANE MAROGER I met Cheryl properly in 1998, when I visited her at her home in Berkeley. I was quite impressed. I was cautious because not only was she twenty years my elder, but also an experienced activist with robust rhetoric. When I went back to film and interview her, my motivation, as I can see now, was twofold. Primarily, I was addressing a disabled woman with the issue of breaking free from ableist norms. As a younger woman in search of role models, I was very curious about her emancipatory journey—and so we were going through her work. My other consideration was to talk about disabled people’s political history, of which she was an artistic custodian. This was totally new to me. Cheryl came a long way to eventually create a one-woman show that blends stand-up, spoken word poetry, like slam, and singing. Artistically speaking, there was a totality that worked: her body and the way she used her deformed hands were just as important as her voice and her sensuality. For all these reasons, she impressed me. Even when she was excessive, there was a balance. Cheryl died in 2013, and I can see now that, when I filmed her in 2000, she shared powerful things with me: her systemic criticism of ableism and this political journey she expressed throughout her work.
LUCIE CAMOUS Around Cheryl, there was also a whole community of artists, of activists from the Crip movement in the States. What did you discover among them?
DIANE MAROGER It was amazing to see, in a small town like Berkeley, which was one of the cradles of the Civil Rights movement, so many disabled people living there, and from different generations. Through Cheryl, I met Judy Smith, who founded AXIS Dance, the first company in the US to bring wheelchair and able-bodied dancers together. I met Corbett O’Toole, a lesbian author who has contributed to connecting East coast feminists and West Coast crip women, who was very close to Cheryl, as well as Denise Sherer Jacobson, one of the pioneers of the Independent Living Movement. When I returned to France, nourished by my encounters with all these women who managed their life autonomously in spite of substantial disabilities, I wrote my documentary project Du côté des femmes invisibles, on the issue of how role models are impossible to find when you are born to a family of able-bodied people with no contact with any of these communities.
LUCIE CAMOUS Yet, this film was never completed. How did you experience the difficulty of making it happen? What stayed with you after that experience?
DIANE MAROGER The Californian part was shot but the film remained unfinished because, in the meantime, I had another documentary project that the TV channel France 3, chose to produce and broadcast first. I had already filmed Cheryl by then, and I even made a short video, twelve- to thirteen-minutes long, Body Talk, with the poems that we had filmed her performing. We decided together on the set of poems that would help her to sell VHS—the format at the time—to schools, symposiums, etc. She was delighted to have this short piece I had cut, gotten mixed and color graded. Around the same time, I also made a rough cut of my interviews with her, to show producers. And later, between 2006 and 2008, I used twenty-five minutes of this one for a conference on the theme of disabled female artists. I received a lot of encouragement to finish this film, but I was already busy with another project, the Retour d’image film festival. The latter project was about creating a space in theaters to look at images of disability stemming throughout film history, from the perspectives of those concerned. Four editions took place—in 2003, 2005, 2007 and 2010—steered by a programming committee made up of disabled professionals from the cultural world. During those years, by bringing together able-bodied and disabled critics and programmers, we explored various perspectives and image categories. This festival demanded total inclusivity. Its production was innovative in that, for the first edition, all films were subtitled and over half had audio description, (written in advance and then interpreted by actors broadcasting live through headphones). The idea of gathering everyone together in a theater—the widest range of audiences with or without disabilities—was a first in France. The debates were also interpreted in sign language. For me, this was a dream come true: to hold up the mirror of cinema to the people concerned, raising awareness in the film industry about representation, according to who is watching, along with their access needs. This already existed elsewhere, but it had never been done in France. Then, much more recently, discovering the French crip scene—namely your work and your perspective, Lucie—and later on that of Crash Room (the translation platform dedicated to disability and access practices co-founded by Étienne Chosson), gave me a fresh impulse. I understood that now was the time, that the context was favorable here for the reception of this first unfinished film. Searching online, I saw that no one amongst the French disability studies researchers and activists mentioned Cheryl Marie Wade. Étienne brought to my attention that even in American crip poetry anthologies published after 2005—when Cheryl was still alive albeit retired from public life—and even more so after her death in 2013, she did not have the same status as a pioneer author as in the 1990s. It was as if her work had disappeared as her pain grew and as she needed to step back. I felt the huge responsibility of sharing the work that we had done together. My rushes could not remain hidden any longer.
LUCIE CAMOUS Étienne’s and my perspective, our enthusiasm and energy may have been a leverage to make this work re-emerge.
DIANE MAROGER Yes, that’s exactly it. There was something buried about it, under layers of waiting, and documents kept, to be shown to you one day [laughs]. And I like the fact that these are now archives. I have always felt that our lives as disabled people are important to record. There is an awareness of that now.
LUCIE CAMOUS And now we are busy, slowly reviewing these rushes of Cheryl filmed in spring 2000. What does it stir in you to see all this material again after so long, with two people from another generation seeing this as a piece of work that must be shown?
DIANE MAROGER Together, we are having this experience of looking at rushes where we learn how our rights were first conquered, the way curb cuts got lowered, etc. This is what Cheryl tells us and this is what fueled her work, her enthusiasm and energy—that you, too, have as pioneers. I am very, very moved by how quickly you connected with and became fond of Cheryl, distinguishing in her words what speaks to you directly, and how anger shapes a political, and subsequently an artistic, expression. With you, I have also seen these rushes somewhat differently.
LUCIE CAMOUS How do you revisit this moment, Cheryl’s voice, her words through the subtitles, in all their complexity?
DIANE MAROGER I had an intense sound memory of Cheryl’s voice, which is a major component of her work. As I completely lost my hearing for a few years, when I was looking at the rushes then, I could not even hear the very words I had brought her to say. Today, I am accessing this material again with a cochlear implant, but it is not perfect; the voice I perceive is altered since my cochlea only contains sixteen electrodes instead of the several thousands of hearing cells. We captioned all my rushes together in English, and I manage to complete the gaps based on my memory, even though I cannot hear the fullness of the sounds. My sound memory restores this voice now, so it feels like Cheryl’s again.
LUCIE CAMOUS What do you hear in her words that you did not hear at the time?
DIANE MAROGER Now that Cheryl has passed and the Trump years have started, I think I better appreciate the importance of making history and recording, because the possibility exists that it could be deleted overnight. The archive is charged with a particular emotion through all that it foresees. Cheryl was already questioning what the future would do. I also hear, more so now than in the 2000s, the importance of collective work. I had started out on a quest for role models, but she told me a lot about collectives. Today, I look at this footage alongside people who do not believe one can do good outside of collectives. This enables me to reconsider my own journey. The path that Cheryl set me on is that of accepting to dwell and work on the margins. As a student, I had been encouraged to pursue in an art education provided I did not talk about disability. Yet, in her case, addressing disability was precisely what brought her a plethora of things to express; it was a source. After meeting her, to position myself within this identity—when there was no real community in France yet—required a lot of strength. Forming crip communities was not that obvious. After meeting Cheryl, it became OK for me to work outside of the mainstream. With you, things are different because we are not from the same generation. I had written my documentary and shot this archive with the next generation in mind. Being at the heart of that whilst working together, observing up close your creative process and that of other artists, actually makes me want to work on this film project again. The Retour d’image festival had also been an attempt at generating collective awareness, but in the early 2000s, disability nonprofits were not very politicized. When I advertized for the festival, the managers of nursing homes and of special ed institutions would say that people with disabilities rarely went out and that they wanted to enjoy themselves without being reminded of their disability. Today, a new generation says, “No, we have the right to claim our history, to have a critical perspective.” They refuse to be confined by institutions for the disabled; theirs is a truly rebellious movement. Only the Deaf community had been operating as a collective, because it was united by a common language and a culture, with a specific artistic expression (especially in theater, with the International Visual Theatre). For a long time however, its claims did not relate to, nor reach, those of other disabled people. The fear of another’s disability was still part of the ableist conditioning, which I personally rejected, thanks to my encounters in Berkeley and the fact that I have several disabilities. I had to juggle with these disparities between potential audiences. I for my part found this shifting towards another’s perception very interesting: it involves both projection and collaboration, similar to what the community which Cheryl talked about was doing. In France, this mutual help and care mindset only was born from the desire to break free [from institutions] with a wish for empowerment.
LUCIE CAMOUS Is continuing to weave this intergenerational connection, this genealogy, and building together the history of crip art, a way of caring and remembering?
DIANE MAROGER Absolutely. Your perspective and our coming together address possibilities that were not those I had imagined. I had no idea that the “Crip Time” concept had been theorized to the point of making space for itself in curatorial relations, until you talked about it at a conference I attended. I remember that, in Berkeley, some women were telling me that, at 40, they had decided to slow down; they explained Crip Time to me in their own words. I was coming from Paris where I worked in the film and TV industry, so you can imagine the rush! I found it crazy that the North-Californians lived “underwater” [laughs], as it were, and slowly. Crip Time is about temporality and shared care. Cheryl needed it. The way she managed time also impressed me. The generation after mine followed that path: it has researched the foundational texts of North American crip practices, and it is aware that knowing our history helps to heal. This is also why we can do the work we’re doing today.
LUCIE CAMOUS When you imagine this footage displayed in an exhibition, what do you expect? What do you seek for the public?
DIANE MAROGER I think about various things. First, the thought of reclaiming the rushes, from the point of view of my experience, having lost my hearing, and of my connection through all those years with this voice, made me want to test some things, to introduce Cheryl to others, through her voice alone, and through her written texts that may appear on screen, without her presence, and then through seeing her perform with her singular body, which asserts with added strength and depth what she said and wrote. The French subtitles also add a tempo to the image. My experience of hearing loss brings me to distinguish different strata of perception; a television film could not convey them like an art installation. Adding to these there will be audio descriptions for visually impaired viewers. The description can operate like an artistic gesture. This is important to me because within the Retour d’image team, we considered the audio description voice as a contribution to the artwork. This made me think further about how we share an experience. In an exhibition, this is not experienced in the same way as in a cinema, where each person wears their own headphones. This little voice that wriggles into the work will be present for everyone, blind or not, in the exhibition. The point is to invite visitors to take the time to listen to the installation and to discover how Cheryl herself describes her own gestures and body. This will not be about imposing an external gaze, but about facilitating listening.
LUCIE CAMOUS Finally, can you tell us about your wish to share this encounter, this story and this crip temporality?
DIANE MAROGER I would like visitors to feel the rejoicing of a body that, although in pain, reclaims itself by expressing pleasure and sharing. I would also like this exhibition to help to open a path into Cheryl’s work, while making people want to discover more. Encountering her temporality is also key. Cheryl did not have a constantly productive life, artistically speaking. Her production conditions impacted on the form and bearing of our filmed conversations. By working with Étienne and you, I am now able to respect my own crip temporality, too. Finally, I would like the threat of minorities’ rights being crushed in the United States, during Trump’s mandate, to be considered in light of the history of struggles and gained rights, as experienced and embodied by Cheryl Marie Wade. We do not always realize how easy it is to erase a culture, and she makes multiple references to this danger. This felt premonitory when reviewing these rushes with you, whereas in the 1990s–2000s, we were at the start of a disabled people’s liberation movement—an important step in order for new legal frameworks to be set up, which your generation has benefitted from as you grew up. For my part, perhaps even more so than her longer performances which were Cheryl’s true tours de force, I love some poems in their own right. In the one entitled The Woman With Juice [Editor’s note: This poem was published under the title “I’m Not One of The” in the journal Sinister Wisdom, No. 35, Summer/Fall 1988], which starts with “I am not,” she runs through the infinite spectrum of our imaginary, sensory, social, historical and archaic crip identities—to eventually define herself as this whole and desiring woman who does not lack something. Among the assigned or claimed identities that she evokes in this incredible poem, she says, “I am not one of the able disabled.” This sentence captures pretty well the young woman I was before I went filming in the US, visibly disabled, yet subjected to internalized ableist assumptions, particularly in order to conform professionally, as I aspired to the same opportunities as able-bodied persons, exhausting myself to such an extent that I was unable to finalize the film. I would like people to be moved by this poem, or another that relates to them directly.
First copy translated by Karine Leroux.
Final English copy edited by Diane Maroger.
BIOGRAPHIES
DIANE MAROGER is a French editor, filmmaker, and producer. Her documentary Maternité Interdite was broadcast by France 3 in 2003 and was awarded the Clé d’Or prize at the Festival de Lorquin. That same year, she founded the festival Retour d’image – cinéma et handicap and the non-profit organisation of the same name which specializes in inclusive education and training, working to create programmes that articulate accessibility and creation. In 2018, Diane Maroger joined Decia Films, where she has accompanied the development and production of a number of documentaries.
LUCIE CAMOUS is co-curator of the exhibition “Cheryl Marie Wade, Queen-Mother of Gnarly” with Étienne Chosson, and has produced since 2024 the podcast Variations, a series of interviews with artists, researchers and activists who identify as crip, queer, Deaf or disabled.
The full interview of Diane Maroger by Lucie Camous (in French) and its transcription are available on the podcast Variations.