Our visions as feminists living with disabilities and chronic illnesses often grow out of the pain and discrimination in our own lives. We experience life in a society that does not value us as women nor as women with disabilities, and we begin to imagine what life could be like if society were inclusive of our lives and valuing of all people. We des ire the freedom to live ordinary lives-to go shopping without clerks ignoring us or making rude remarks, to attend events that consider accessible space and appropriate food and to be in relationships where we are loved just as we are. The world needs us with our imagination and creative visions. It needs to listen to and learn from us. We are charting new territory, exploring new visions, and creating new spiritual resources.
We discovered that part of our spiritual strength is learning from our pain. All of us know pain-for some of us physical and mental pain, for some of us the pain of loss, for some of us the pain of rejection, humiliation and discrimination, for some of us the pain of despair. We believe that knowledge of how to live with pain is one of the spiritual gifts much needed by our world. Liz Richards claims, "The world is suffering and hurting right now. The world needs now as never before, the voice of those who are learning how to live in hope in the midst of pain. It is important not only for ourselves but to the world that we hold onto the precious treasure that is our life and that we find the way to live with hope in the midst of des pair, with peace in the midst of struggle, with courage in the midst of fear ."
Another critical spiritual resource for us all is our ability and willingness to question everything and to be creative. Our faith is not based in dogma and belief as much as in the struggle and the exploration. Questions posed by Mary Elford are typical of this kind of challenging faith: "What is the worth of a person? Are some people worth more than others? Does God love non-disabled people more? Are disabled people loved more because they must be stronger to cope with life? Is it more important to be nice, or nicer to be important? Why do we deny some parts of ourselves, and play up other parts? Are not all parts created, and thug good? How much does it cost to be generally even-tempered? How much does it benefit? How important is community, and inclusion of those on the fringes and margins?"
As women with chronic illnesses and disabilities we have to be creative. We invent ways to live in a society that disables us and does not invite our participation. We offer different perspectives on ethical decisions and social issues than those with able bodies and minds. We live with loss and limits; we face fear and life- threatening situations. Out of these come powerful and creative spiritual resources that we offer society.
Living on the Edge
As women with disabilities and chronic illnesses, we need to tell our stories honestly, to be accompanied by people who love us, to be in mutual relationships and non-hierarchical communities where we can participate fully and freely. Our spiritual lives are strong when we believe ourselves to be made in a divine image, when we see ourselves mirrored in what is holy, and accept ourselves as loved unconditionally by the creative spirit. We are able to offer wisdom to a broken world on how to live with suffering. We invent new ways of entering the presence of the holy. We expect the gifts of respect, care, advocacy and solidarity from those around us as we offer models of truth-telling, anger, passion, creativity, and humor that come with living on the edge.
The Barb Wire Collective has learned a lot from each other and from our own experiences of living with disabilities and chronic illness and about the spiritual resources emerging from those experiences. Or as Mary puts it, "My learning from working together? Our gathering was so supportive of ail our different states and needs. Even if the book is never published, we benefited from meeting each other, and from the care and planning given to creating the atmosphere where that happened." We've learned a lot!
Charlotte Caron lives in Saskatoon. Other members of the Barb Wire Collective are: Gail Christie, Sharon Davis, Mary Elford, Joan Heffelfinger, Elinor Johns, Christine Neal, Liz Richards and Jayne Whyte. This article and the work of the Barbwire Collective are in memory of Barbara J. Elliott.