More than once I have been blessed with the opportunity to be present when a child is born, …the births of my two daughters, my nieces and nephew, and most recently, our granddaughter. I can only describe it as receiving an incredible gift. It is an awe filled experience leading me to wonder how the gifts held within this tiny body that entirely depends on others to survive, will be made known as time passes.
I have learned so much about “the gifts” that we each carry, through relating with, observing, and listening to Judith Snow, who passed away, May 31, 2015 at the age of 65.
When I met her I discovered that she could breathe, chew, swallow and digest her food, speak, and move one thumb that activated a switch that controlled her very large wheelchair. For anything else she needed someone to act as her arms and legs. That was the job. This would be a challenge, but I was most interested in who she was, and absolutely curious about how she lived. I expressed my interest in working for her, and Judith hired me.
In spite of the fact that her body could not move on its own, Judith would always say that she was not “disabled”. The conditions that her body presented to her life, though challenging, were inspiration for creativity. Daily life was a creative act, much like an artist facing the challenge of bringing a vision to life, always facing the limitations of the materials available. The imaginative manipulation of these limitations that make each creation unique.
As her attendant, I went wherever she was going. My job was to listen, to take her direction, to do the things that would make it possible for her to participate in the things that she wanted to participate in, to be her arms and legs when she needed them, and fade into the background when necessary. This included everything from waking up in the morning, bathing, toilet, dressing, preparing food for the day, eating, shopping, and driving to all of the places she met with people…and in the evening winding down, doing all of the things required to be able to sleep.
I learned about the art of listening to words and silences, of paying attention, and being conscious. There was a quiet tiredness in the evening that made everything more clear. For Judith to move in and out of her chair and bed, she required the use of a Hoyer lift. To use the Hoyer lift, Judith sat in a sling attached to a hydraulic arm that her attendant would pump to raise her up, move into position, and lower her to her chair or bed. She was so attuned to her body from lessons learned over a lifetime of experience. Her slow, clear, and specific instructions to me about how to move, and prepare her body, were designed to ensure that there would be no creases of fabric or skin that would become pressure points that would create sores, or movements that could break her bones. Her awareness of her body was heightened by her inability to move it. Judith possessed the wisdom that comes through experience. She made the direct connection between mind and body. Absence of mindfulness had a direct line to physical harm.
I became aware of how my emotional state, affected my ability to relate and interact with others. On days when I was frustrated, angry, or distracted from the moment at hand, for whatever reason, I could see and feel how it affected the way that I listened, touched or moved Judith’s body. My lack of attention, or the intensity of my emotion, could easily cause her harm. More than 30 years later, I think of the relevance of this in all of my interactions and relationships.
I met the people who were her friends. fascinated by the fact that they too did not see Judith as “disabled”. To them, she was Judith — funny, curious, raunchy, competitive, and interesting. She was a friend who they deeply valued, and the only times that they paid attention the fact that she used a wheelchair, was when they made room for her to be with them, adjusting entryways to their homes, transforming living rooms into a bedroom, inviting strong friends to help lift her into places she could not roll into. When you know the value of a gift, you do whatever intakes to make room for all that can be received. To her friends, accessibility was a state of mind.
I met people that she was meeting for the first time. I heard her conversations. I listened to her speak. I traveled with her as she followed her interests, and the invitations she received to bring her perspective, thoughts and questions to people.
Clearly her mind worked…constantly. She was a thinker. A whole world of thought and imagination was very much alive in her mind. She questioned everything. Practical questions were incubated in the mundane challenges of daily life, of figuring out how she could get dressed, eat, move, get in and out of bed, travel, and live in a world that was not designed for her participation.
Existential and philosophical questions captured her imagination as well, partially inspired by living with an acute sense of mortality. Judith pondered a million things: the meaning of life; purpose; death; justice; politics, sex, intimacy, spirit, relationships, religion, art, power, vulnerability, inclusion and community. Nothing was out of bounds to her questioning.
Judith’s life depended on her questions. To not question, would have meant isolation, illness, poverty, and death. Curiosity was essential to survival. Judith developed mastered the art of good questions. Her perspective, and her “Why?, “Why not?” and “How might we…?” questions took Judith’s being, and her thoughts around the world, meeting people who would be challenged, inspired, and moved, by the gifts that her life would bring.
In writing this, I run the risk of of being seen to be projecting Judith as perfect, or as saint. Nothing could be further from the truth. Judith's giftedness is not equated with perfection or the stereotypical understandings of sainthood. Judith possessed the capacity to be blunt, contrary, annoying, frustrating, and extremely inconvenient, that certainly did not feel like a gift at all at times. But her relationships were sustained by the experience of the value that she possessed, offered, and was received, and it far outweighed any inconvenience or discomfort she may bring. And many times the conflict and discomfort she stirred, would settle leaving a clarity that was even bigger than Judith's original "rough" ideas.
“Inclusion is about willingness to take unique difference and develop it as a gift to others. It is not about disability.”
Reflecting on Judith’s life reminded me of an opportunity I once had to listen as an Ojibway elder from Northern Ontario spoke about the roles that each person must embody in service of the tribe. He spoke of how within his tradition there is a role for elders, grandfathers and grandmothers, aunties and uncles, in paying attention to the children as they grow, becoming aware of the gifts that they possess, gifts that the tribal community needs. Key roles are identified as being needed to be filled for the community to sustain itself— leaders, healers, warriors, teachers, and more. As children grow and their unique giftedness becomes more apparent, elders discern the role that each child will be called to embody in service of the community. Through this discernment, the elders connect the growing child with experiences and people who will become their teachers as they hone and develop the mastery required to be of service to the tribal community.
The elders presume giftedness. Each child grows into the expectation of contribution. Grandfathers, grandmothers, aunties, and uncles, pay attention to the unique manifestations of these gifts. They call upon the children to honor these gifts, to be grateful to the Creator, to take seriously the responsibility to develop and nurture these gifts so that they may be offered in service to the people. The value of a gift is only experienced in the sharing. It is the responsibility of each member to make their offering for the good of the whole tribe.
In North America, we live in a dominant culture that narrowly defines “giftedness”, by limiting constructs of beauty, intelligence, physical strength and prowess, and art. Giftedness has become an exclusive club, so much so that to dare to see ourselves as “gifted” is to become "grandiose", "arrogant", "narcissistic", setting ourselves apart from, and raising ourselves above the crowd. It takes courage to be gifted in a world that misses the point of gifts.
For Judith, giftedness is very ordinary. It is our mysterious, wonder-filled, natural state, and it includes us all. No one is exempt from giftedness. No one gets a pass from the expectation of contribution.
In Judith’s small body, entirely dependent on others to survive, amazing, wonder-filled, gifts were held…and shared, and now remain as an example for living that is worth considering.
On the day I heard of Judith passing, I paused in silence, and listened...
Hearing LIFE calling as she passes through:
An exploration of writing as a means of paying attention to themes that have captured my interest. --justice as "right" relations; gifts as what we have to offer; and beauty --within us, around us; and in all our relations.
Copyright ©2016 David Hasbury. All Rights Reserved.,