We are Who You are

What happens when a successful feminist filmmaker (Not a Love Story: A Film About Pornography), who is also a wife and mother, is struck by a catastrophic brain-stem stroke...

It all begins in 1987. I am 46 years old, and enjoying an athletic and sexy vacation with my husband, Michael. On a hot day we bicycle 10 miles to the town tennis courts. I feel weak and nauseated, and play badly. We think it must be junk-food poisoning.

Within several hours, I am staggering and slurring my speech. I have double vision. Michael, a family physician, recognizes the signs of central nervous system damage. At midnight, he speeds me home to Montreal, to the emergency room of the hospital where he works.

Diagnostic tests are inconclusive. We are shocked and scared but I begin to stabilize. Within a few days, I am released from the intensive care unit, and take a few steps with a walker. After two weeks, we celebrate our twentieth anniversary in the hospital with our children. I feel blessed and happy to be alive.

The next day I become totally paralyzed. Semiconscious, I am "locked in" and unable to speak. A respirator breathes for me. A magnetic resonance test (MRI) reveals that the congenital malformation at the base of my brain stem has bled, resulting in several strokes. It is like a time bomb waiting to explode again. Local specialists declare it inoperable because of its inaccessible location. Close family and friends come to say goodbye.

Michael refuses to accept this fatal verdict. He locates a surgeon who is prepared to remove the malformation.

I am jet-ambulanced on a respirator to London, Ontario. By my bed, the surgeon posts a newspaper clipping: a picture of me with Kate Millett from my documentary Not a Love Story. I overhear a staff remark: "She used to be a filmmaker." I remain in intensive care for several months. Michael stays with me, acting as husband, family doctor, nurse and advocate. He will not resume work for several months.

As I come back to life but cannot move, speak or breathe, I have frequent panic attacks. Only Michael can talk me down. He breathes with me until I fall asleep. The literal meaning of "conspire" is to breathe together. We are in a conspiracy for my life. This becomes the metaphor of our partnership. This is a love story.

Recovery

Back in Montreal, I spend more months in the hospital, and then in a rehabilitation institute. Like a helpless baby, I learn how to swallow, speak, sit upright, use the toilet, stand.

Memory Journal: When I am sufficiently recovered, I get bathing privileges twice a week. A male orderly transfers me to a gurney and wheels me down the hall. I am "wrapped" diaper-fashion in a rubber sling and, with a horrible-sounding grind, winched into a tub where a nurse bathes and shampoos me. The soothing warm water is one of the few nice body sensations I have. But it is frightening to be winched. I can hear older women screaming and moaning, and all I can think of -- as in my nightmares -- is a concentration camp.

But I am never abandoned to institutional care. I am supported and nursed every day by Michael and our daughter, Naomi -- then 17. Our son, Seth, 19, begins attending the University of Toronto shortly after my surgery. He studies on the five-hour train commute each way; his enthusiastic comments about my dramatic changes since the previous weekend are like a transfusion. Naomi is just emerging from a difficult adolescence. Conflicted by her mother’s highly visible feminism, she has asserted her individuality by learning the skills of femininity. Now she does the intimate niceties for me -- shaving the underarms; bleaching the facial hairs darkened by steroids mistakenly prescribed. My skin is blotched, my features lopsided, but my daughter makes me feel pretty. Not surprisingly, Naomi also fails her semester at school.

Several months after the stroke, as soon as I can use a pencil, the occupational therapist helps me to copy circles and squares like a schoolgirl. My first communication is an illegible letter to Naomi, in which I share my fear about how slow recovery may be, an admission I make to no one else. Once I can write, I begin my journal, which becomes a tool for my survival. I use it to process the strange and troubling events happening in my body, to record thoughts I cannot trust my damaged mind to remember, to remind myself how far I have come.

The Long Haul: Rehabilitation

After seven months in the hospital, I am at home over the next two and a half years, in the long process of rehabilitation. I have conventional physical, occupational, and speech therapy. As I gradually improve, I remember my old feminist wisdom that I know my body better than anyone else. I take control. I experiment with so-called alternative approaches, like acupuncture. Michael and I dance and play, in whatever motivating ways we can invent to push my physical limits. And I learn to rest. In my prestroke life, this was never easy for me, juggling the three F’s: family, filmmaking and feminism. Now I have no choice. My body’s messages are non-negotiable.

The anguish is profound when I let it emerge, and it comes out at the slightest invitation.

Journal, March 1, 1989: This evening, when Michael and I dance, I am weepy. Because he’s been outside playing basketball, my girlhood sport, while I am curled up inside in bed. And because I can hardly dance, and dancing was one of the things we did together, starting the day we met 22 years ago. I want to kick up my heels, and they won’t go, dammit! But strange as it may sound, I also experience the euphoria of just being alive. It is not a cover-up, it is real. I laugh out loud when the leaves riot with autumn colours. I am living on the edge, with no script guides or maps, inventing every moment as I live it.

The stroke hit me in the middle of editing a film. The producer and editor bring the film to the hospital and my home so we can work on it together. Mile Zero is the story of four teenagers -- one of whom is Seth -- who are organizing against nuclear arms. The premiere, 16 months after my stroke, is the most triumphant moment in my rehabilitation. I have reclaimed the important piece of myself that was a filmmaker.

Yet I still do not accept myself as disabled; disability is "a stage I am just passing through." For the premiere, I reject a fully accessible educational institution and choose a glamorous cinema with inaccessible bathrooms -- even though I am in a wheelchair.

I long to hold on to the acute appreciation of life engendered by the survival and rebirth, but euphoria does not last indefinitely. My mother dies after a long struggle with Alzheimer’s disease. This loss is compounded by Naomi’s departure for the University of Toronto. I want to be generous about letting her go, but losses are interconnected: I mourn my mother, my daughter, myself.

In June, 1989, almost two years poststroke, I receive a last-minute invitation to participate in a festival of Canadian films abroad. Two of my films are featured. My immediate response is "Impossible! I can’t travel without personal assistance." The travel money is quickly offered to another filmmaker. When Naomi discovers me crying, she offers to quit work to accompany me. We go off together at great personal expense, and greater trepidation.

The women who had organized the festival -- also Canadian filmmakers -- had promised to "accommodate" me, but they make no provision for my needs. I am expected to fit in and keep up. They schedule my films late at night when I am too tired; they do not include me in panel discussions or press conferences; they arrange social events in inaccessible places. I miss the informal personal exchanges catalyzed by the shared film experience.

I can no longer move in what had been my world. I feel I have been used for my films, but neglected and made invisible as a person. I feel as if my colleagues are ashamed of me because I am no longer the image of strength, competence and independence that feminists, including myself, are so eager to project. There is clearly a conflict between feminism’s rhetoric of inclusion and failure to include disability. My journals reveal that this is the only moment in which I think of suicide.

I am coming up against multiple barriers, personal and social. I cannot return to my former life, and I do not know what my life will be now. Even feminism has betrayed me. It seems too narrow a lens for the new realities of my life. I also feel an unresolved conflict between feminism and my increased dependence on -- and appreciation for -- Michael.

About two and a half years poststroke, I have an experience that begins to clarify my thinking about feminism. We spend the winter in Beersheba, Israel where Michael is working to help me escape Montreal’s ice and snow. A woman from the local chapter of the Israel Women’s Network phones: as a visiting feminist, would I speak on any "women’s issue" of my choosing at their next meeting? Again my first reaction is negative: "I am no longer engaged with women’s issues; I have been so self-obsessed with my stroke that’s all I could possibly talk about." Her response is quick: "That’s exactly what we want to hear about, but were too shy to ask!"

I have forgotten how wonderful it is to share intimately with a group of women! I read bits from my journal, and my story prompts theirs. One woman says, "My relationship with my husband is fine as long as I’m healthy, capable and available sexually, but I don’t know what would happen if I were incapacitated." She hadn’t read the United Nations statistic that women with disabilities are twice as likely to get divorced or separated as men with disabilities. We realize that we rarely talk about illness, disability and dying, though we will all confront these realities.

Every issue is a woman’s issue; relationships, dependence and autonomy are as much a part of feminism as day care and violence. I have undersold feminism. I slowly recognize that the way I am living my stroke has everything to do with myself as a feminist -- as well as with implications for feminism itself.

"Coming Out" Disabled

I feel comfortable and stimulated in this group of Israeli women; they are middle-class, middle-aged, married Jewish women like me. But no one else there has a disability. I am "other." I desperately need company.

I had first heard of DAWN (the DisAbled Women’s Network) Canada years earlier when it approached Studio D to make our screenings more accessible. We appreciated being sensitized, favoured wheelchair-accessible venues, and enjoyed the aesthetics of sign language interpretation with our movies. But sometimes DAWN’s demands seemed "excessive"; our meagre resources were already exhausted by items on our agenda that seemed to affect most women. But in retrospect, I know that as a not-yet-disabled woman I was afraid of disability.

As soon as I return to Canada, I dig DAWN’s phone number out of a feminist newsletter. I realize that its agenda is identical to mine (and feminism’s): dependence and autonomy, image and self-esteem; powerlessness, isolation, violence and vulnerability; equality and access; sexuality. Three years after my stroke, I go to my first DAWN meeting at the local YWCA.

I feel apologetic, illegitimate, because I was not born disabled, and am not as severely disabled as many other people. I feel guilty about my privileges of class, profession (including my disability pension) and family. I am a newcomer to the disability movement; I have to pay my dues. (Doesn’t this litany sound "just like a woman"?)

Our talk keeps moving between the personal and the political, because disability -- like gender, race, age and sexuality -- is a social as well as biological construct. The DAWN members, typical of women with disabilities, are mostly unemployed, poor and living alone. It is like the early days of consciousness-raising in the women’s movement: sharing painful (and funny) experiences, "clicks!" of recognition; swapping tips for coping with social service bureaucracies and choosing the least uncomfortable tampons for prolonged sitting. It is exhilarating to cry and laugh with other women again.

Here I am not other, because everyone is other. It is the sisterhood of disability. The stroke has connected me with women who were not part of my world before -- working-class women with little education, women with intellectual and psychiatric disabilities, women with physical "abnormalities" from whom I would have averted my eyes in polite embarrassment. All women like me.

"We are women. We are women with disabilities. We are women who are abused. We are your sisters. . . . Your issues are our issues, and each of our issues is also your issue. We are who you are." (From Meeting Our Needs: An Access Manual for Transition Homes, DAWN, June, 1991.)

I discover it is easier for me to be a disabled feminist than a disabled person. Feminism means loving myself as I am. After three long years, I am finally ready to accept myself as permanently, irrevocably disabled: acceptance is not an event but an ongoing process. I learn more about the disability rights movement. I meet other women with disabilities, who become my buddies, sisters, teachers and "rolling" models. I learn, not surprisingly, that women are leaders in the disability movement.

Journal, October, 1990: Boston’s first Disability Pride Day. I usually dislike the rhetoric of rallies, the solicited mass response. But today I want my tape recorder. A gutsy, nervous young woman with the thick drawl of cerebral palsy is emcee. Not only is her speech different, but there is a new language being spoken here. I feel like a privileged eavesdropper at first, but she is speaking for me and about me. Or is she? She cues us for a chant: "Disabled and . . ." The crowd responds: PROUD! My throat jams on the word mid-chant. Is this honest? Who am I trying to fool? It’s one thing to accept, but another to be proud. I’m proud of surviving and adapting maybe, but am I proud of being disabled? But it feels good to be shouting with hundreds of other bodies, looking happy despite -- because of? -- their "deformities." Or is the word "differences"? Or is it "our"?)

Happily, the timing of my personal journey is synchronous with the women’s movement. The Canadian Research Institute for the Advancement of Women (CRIAW) announces the theme for its 1990 national conference: "The More We Get Together . . ." on women and disability. I decide to go, alone, to Prince Edward Island. Thanks to the joint efforts of CRIAW and DAWN, this historic event is not only totally accessible but empowering -- for both the women with disabilities and those without. Every woman with a disability is paired with a "sister" who gives us whatever assistance we need -- and who learns firsthand about disability.

It is a coming-out experience for many of us. For me, it is the first time I identify myself publicly as a woman with a disability, and revel in the company of so many others. Because women with disabilities are often isolated, for many this is their first conference. They learn from the experience of longtime feminists.

Many of the so-called non-disabled women come out as well. Kay Macpherson, 79, and Muriel Duckworth, 83, are well-known Canadian peace activists and feminists. But we have never considered them "disabled." Now, for the first time, Kay talks about what it means to be losing her sight. She talks loudly because her close friend Muriel has learned to be assertive about her increasing deafness. Muriel and Kay describe their support networks of friends who look after each other by sharing meals -- and house keys in case of falls. Our stories lead us to discover the continuum from "ability" to "disability." My stroke has given me a telescope on aging. We are all disabled under the skin -- each of us has vulnerabilities, visible or not, and they are part of us. We are interdependent. Feminism is strongest when it includes its "weakest."

I leave CRIAW with a new sense of purpose and continuity. No longer illegitimate among either feminists or people with disabilities, I feel I have a particular contribution to make: perhaps I can help to bridge the gap between our two cultures. After all, my life’s work has been about telling each other our stories.

Where Am I Now?

After five years, my physical condition is still evolving -- but almost imperceptibly. I feel constantly imbalanced. I stand and walk with two canes, slowly and unsteadily. For longer distances, I drive my electric three-wheeled scooter, Gladys, but she can only be transported in a lift-equipped van, and furthermore is stopped by the smallest step. I am often dependent on someone to push Manny, my portable manual wheelchair. I do not drive a car alone -- yet.

I need to exercise and nap every day, and I get weekly massages, acupuncture and chiropractic to maximize my fluidity and minimize my pain. With only one functioning vocal chord, I choke frequently, but my speech is intelligible (and my voice as breathlessly sexy as I always wanted). I tire easily and tolerate stress badly.

Being forced to slow down is not all negative. The rhythm of my life has changed dramatically. Before, it was governed by the calendar and the clock. Now I follow the natural pace of my body. The tasks of everyday living take me much longer. I have become patient, as have those around me. I have to ration my limited energy and choose carefully whom I see and what I do. I have no time to waste on bullshit, but I do have time to smell the flowers, cherish my solitude, and enjoy the fullness of the company of intimate friends and family.

But I need to be useful and connected, to feel once again that I am contributing to making this a better world. I don’t know if I will ever make films again, but I am writing a book about my experience, and spending time with other people with disabilities. As with my walking, it all comes to balance. Some people look at me suspiciously when I hint at the gifts of the stroke. I would never deny the pain of dependence, the grieving for lost freedoms, the fear for the future. Would I take an immediate cure if offered? Probably. But would I want to undo it, as if it never happened? Absolutely not. It has become part of my identity. It is who I am now.

In retrospect, the "clicks!" in my consciousness about disability paralleled my coming to feminist consciousness two decades earlier. For a long time, I denied I was disabled, and kept my distance from other "cripples" in the hospital gym because I was an exception to the rule. Later, I was sure I could "overcome" it; I would be supercrip (superwoman); I would support the rights of other people with disabilities, but I was not oppressed. As time passed, I experienced with great pain the ways in which other people’s attitudes and societal barriers disempowered me. At first, I internalized the oppression and lost all self-esteem. Then, as I reconnected with feminism and discovered my commonality with other women (and men) with disabilities, I began to see more clearly. With solidarity came strength.

Between writing this piece and correcting the galleys, I have taken a giant step in my journey. I went to Independence 92 in Vancouver, an international conference on disability -- more than 2,000 of us from more than 100 countries. For one week, I had the heady feeling that we were taking over the world. Even better -- we were remaking it, creating a world in which difference is not the problem but part of the solution.

It is a feast for this disabled filmmaker’s eyes: a gridlock of wheelchairs on a freight elevator, a shoulder chain of the blind leading the blind, signing singing, nursing babies in wheelchairs -- images we have not seen because we disabled are invisible, even to each other; images so rare and precious they have not yet been co-opted or trivialized.

Somehow, I think I will be making films again.

(This article was reprinted with permission from Ms. magazine, � 1992. Bonnie Sherr Klein’s films include Not a Love Story and Speaking Our Peace (National Film Board of Canada).