On the surface, disability may seem a surprising topic for conversation,
particularly among people who don't consider themselves disabled.
In opening Waist-High in the World: A Life Among the Nondisabled,
Nancy Mairs tells readers that "in embarking upon this book
about disability, I have committed myself to spend months contemplating
issues and experiences that mark mine as an undesirable, perhaps
even an unlivable life." (p. 4) Yet through Mairs' work and
through our own reflections on disability, illness, human frailty
and human adaptability, we can come into a deep encounter with the
power of human compassion and relationship, the potential for human
resilience and resourcefulness amid change with our own bodies and
our spiritual lives.
For some of us, disability may feel distant, an uncertain and possibly
fearful category which implies difficult questions about mortality
and human frailty. Or disability may be close to home-embodied by
friends, parents, siblings or acquaintances. Disability may seem
burdensome, simply human or disturbing; full of unexpected grief
and also unexpected beauty.
For others, disability is an ongoing experience, a continuing process
of adaptation, creativity, loss and adventure. Disability may be
a source of pain, and also a source of pride. It can represent a
struggle with the body and a struggle with an inhospitable world.
It can also involve an ongoing sense of surrender, a willingness
to encounter surprise. Disability can be feisty, frustrating, ordinary
and insightful.
In Waist-High in the World, Nancy Mairs shares her own insights
on the nature and meaning of disability in her life. Her essays
invite us to grapple with her, to be challenged and to be changed
by her testimony. Whether or not we know disability in our own bodies,
thinking about disability can bring us into a more fully human encounter
with the meanings and deep necessities of life.
This discussion guide aims to create a framework for Unitarian
Universalist discussion groups to share ideas about:
the uniqueness of our own bodies and our own resources for adapting
to illness, disability, change and loss;
how the constructed world creates problems for certain people,
who we commonly call people with disabilities;
the challenges and spiritual benefits of giving and accepting
care; and
supporting and respecting people with disabilities, as well
as acknowledging our own potential for living with a disability.
This program encourages the reflections and contributions of all
people, whatever their experience with disability.We hope it will
foster meaningful conversation between people with and without disabilities,
providing a space to explore the complexity and creativity of human
life.
Many congregations have a number of resources for publicizing new
programs in the community. It is always a good idea to create flyers
and post notices on bulletin boards and in newsletters. Announcements
during meetings and services help spread the word. Some congregations
promote new programs by organizing "Kick-off Sundays," which include a sermon by a minister or lay leader about a related
topic.
You might consider targeting specific groups to embark on this
journey. For example, discussion groups or support groups for people
coping with illness might have particular interest in this program.
The program might be an opportunity to expand your relationship
with outside groups or encourage other people to investigate your
congregation. People at local disability organizations or independent
living centers might be interested in the program, even if they
aren't members of the congregation.
Adjust the Format as Needed
This program includes reading, reflection and participation in
three two-hour discussion sessions. We recommend a group size of
no more than ten people. While the discussion guide offers specific
questions, readings and activities, feel free to adapt the program
to your own needs. You can substitute your own questions, adapt
those that are provided here and add thoughts of your own.
Provide a Comfortable Space
Hold the session in a comfortable, well-lit setting, preferably
with cushioned chairs arranged in a circle. Some discussions will
be carried out in small groups of 2-4 people, so it is important
to find a space that will enable uninterrupted discussion for small
groups as well as for the larger group. The discussion sessions
call for information to be recorded on newsprint, so you will need
adequate wall space or easels to display what has been written.
You might ask volunteers to provide refreshments and perhaps a light
snack.
Hold the sessions in a room that is wheelchair accessible. When
people register, it's a good idea to ask them if they have particular
accessibility needs. When you promote the workshop, tell people
that you will do your best to accommodate their accessibility needs
(such as large print materials) if they provide advance notice.
Offer to strategize solutions with them.
Involve the Group in Setting the Tone
The group should take responsibility for creating an environment
that is welcoming and conducive to open dialogue. Bring to the group's
attention the importance of active listening, thoughtful responses
and mutual respect. Also, note that occasional silences are acceptable.
Use people's own experiences as a way to ground the discussion when
it threatens to become too abstract.
Some people have a tendency to be more vocal than others. If a
few people clearly dominate the conversation, you might need to
open a space for those who have not had a chance to speak to do
so if they wish.
As a discussion leader, it is important to establish a balance
between too much control and too little direction. It will be important
to be responsive in your leadership and draw people out, yet keep
the discussion on track.
We suggest that the group draft a set of ground rules at the beginning
of the first session, post them on newsprint, and review them at
the beginning of the second session. If all participants give input,
everyone will be accountable to the group's needs. Common ground
rules include:
maintain confidentiality-don't repeat personal stories outside
of the group;
make personal ("I") statements-don't speak for others;
give full attention to the person who is speaking; and
turn off pagers and cell phones during the program.
Prepare for the First Session
Ask participants to read Nancy Mairs' Waist-High in the World:
A Life Among the Nondisabled in its entirety before the first
session. Encourage them to keep a journal of their thoughts and
reactions while reading the book, or to spend some time in reflection
based on passages they found memorable. Let them know that throughout
the program, they will be encouraged to bring in their own life
experiences as well as to reflect on the life and insights that
Mairs' describes.
Evaluate the Program
Two evaluation forms are provided in the last pages of this guide. Participant Evaluation Forms should be distributed at the end of the final session so participants can give feedback to group leaders. (Note that questions 7 and 8 on the form give leaders a chance to pose their own questions to participants.) Also, be sure to send Beacon Press your completed Leader Evaluation Form. We are striving to meet the program needs of UU congregations, and your continued feedback and suggestions will bring us a long way toward reaching our goal. We really want to hear from you!
Materials: Newsprint, markers, masking tape, chalice, candle,
matches, UUA Hymnal (Singing the Living Tradition. Boston: UUA,
1993), paper, pens
Welcome and Opening Check-In (15 min.)
Welcome participants, light the chalice, and thank them for coming.
Make sure that everyone knows where to find restrooms, water fountains,
and other necessities. Encourage people to share their accessibility
needs now or throughout the program. Introduce the program, and
offer time for questions. Circulate a sheet of paper so that people
can write down contact information for your records.
Explain to participants that before you begin,you would like
the group to establish ground rules.
Ask a volunteer to record the group's suggested guidelines on newsprint.
If certain rules you find important are not mentioned, suggest them
yourself. (See "Getting Started" for common ground rules.)
Once the suggestions are finished, check with the group to make
sure that everyone is comfortable with the ground rules.
Tell participants that every session will begin with a reflection
and a check-in. The first checkin will be based on a reading from
Mairs' book, below.
Near the beginning of Waist-High in the World, Nancy Mairs
describes the book she is writing as a guidebook through a country
to which no one travels willingly: the observations and responses
of a single wayfarer who hopes, in sketching her own experiences,
to make the terrain seem less alien, less perilous, and far more
amusing than the myths and legends about it would suggest. (p. 6)
After the reading, ask people to go around the circle and share
briefly.
Ask participants to introduce themselves and state their hopes and
expectations for the program. If they like, invite them to share one
moment from the book-one sketch of Nancy Mairs' terrain-which they
found memorable.
Small Group Discussion: Experiences with Disability
(15 min.)
Separate into groups of 2 or 3. Allow each person about 5 minutes
to share.
What images does disability bring to your mind? Have you or someone
you love experienced disability or serious illness? If there have
been people with disabilities in your family or community, what
are (or were) your relationships with them? How have those relationships
shaped your thinking about disability? How have your experiences
with disability affected your reading of the book?
Large Group Sharing: Telling Body Stories
(30 min.)
In the beginning of her book, Nancy Mairs talks about the particularity
of her own body and her own disability. "My body. And only
my body. The specificity of the personal pronoun is critical to
me." (p. 43) Each of our bodies has a unique history. Over
the course of our lives, our bodies collect their own stories. Whether
accidentally or intentionally, we mark our bodies and they, in turn,
shape our lives.
Going around the group, ask participants to share a story about
one of their body parts
Share a short story of one part of your body-whether a wrist that
pains you, a shoulder you chose to tattoo, a scar you bear, or a
place where your body holds a memory.
Our bodies often aren't what we wish them to be. Nancy Mairs writes
that, before she developed multiple sclerosis,
mostly I was, as I was trained to be, disappointed in myself.
Even in the fifties, before the dazzle of shopping malls and
the soft pornography of advertising for every product from fragrance
to bed linen, a girl learned to compare herself unfavorably
to an ideal flashed at her on glossy magazine covers and cinema
screens and then to take measures to rectify her all too glaring
deficiencies.. . . I could not imagine a body that didn't require
at least minor structural modification. (p. 44)
Sometimes we shape what happens to our bodies, but often we have
little or no control despite the myth that we can triumph over the
body by willpower alone, or with the aid of make-up, muscle machines
and other illusions.
Ask the group to spend about 10 minutes journaling. Tell people
that they will be invited to share their entries with the group,
but that they won't be required to do so.
Write about a time when you felt your body didn't measure up. Perhaps
it didn't do or look like what you or someone else wanted. Maybe
you set a physical challenge that you couldn't accomplish, or felt
impeded by physical realities. How did you respond? Since that time,
how have your feelings evolved?
After the writing, invite people to read a part of their writing
aloud, if they wish. Remind the group that perfection isn't necessary.
In Waist-High In the World, Nancy Mairs invites readers
into her own particular life. The details are uniquely hers, and
she tells us that "At the outset, I want to make it clear that
I speak as an individual and not as a representative of 'my kind,'
whatever you take that to be." (p. 12) She also tells us that
My hope is that, in scrutinizing some of these elements common
to the human condition-among them adjustment to change, body
image and sexuality, the need for both independence and nurturance,
the ceaseless search for equality, justice, and pure pleasure-through
the lens of my own experiences and those of people I know well,
I can bring to life their particular significance in terms of
disability. (pp. 11-12)
Her essays are decidedly personal, and yet they can resonate with
our own needs, fears and hopes more broadly.
Have the group separate into groups of 2 or 3. Give each person
about 5 minutes.
Where did you identify most with Mairs' story? What parts of her
story were unexpected?
Return to the large group and share your reflections.
Nancy Mairs often speaks about nondisabled people's perceptions
of her life. What struck you as most similar to your own perceptions?
Most dissimilar? To what extent to you find your own life shaped
and affected by other people's perceptions of your body or your
self? How does the nondisabled world's power, privilege and perspective
shape the lives of people who don't fit its definition of normalcy?
Invite participants to reflect either through writing or through
meditation, as they choose.
Recall a time when you experienced bodily change. What was difficult?
How did the experience change your perspective or your thinking?
What were the unexpected gifts?
Closing Reading
Thank the participants for their presence and participation.
Close with reading #505 from the UUA Hymnal (Singing the Living
Tradition) or another reading of your own choosing.
Materials: Newsprint, markers, masking tape, chalice, candle,
matches, UUA Hymnal (Singing the Living Tradition. Boston:
UUA, 1993), paper, pens
Opening Reading and Check- In (10 min.)
To open this session, light the chalice and share reading #562
from the UUA Hymnal (Singing the Living Tradition) or another
reading of your own choosing.
After the reading, ask people to go around the circle and share
briefly.
Have people check-in briefly and if they wish, invite them to share
an instance in which they felt cared for since the last session.
Small Group Discussion: Giving and Receiving
Care (30 min.)
Nancy Mairs talks about the tangible, physical ways we take care
of someone as being good for the soul. She believes that "actively
nurturing your fellow creatures through serving them…[develops]
the part of the human psyche that transcends self-interest."
She writes, "I want to do love." She acknowledges both
the weariness and strain that are giving brings her husband George,
as well as the closeness and esteem that it brings.
Separate into groups of 3 or 4. Take about 5 minutes each to
talk about giving care. Then take about 5 minutes each to talk about
receiving care.
What has your experience been with giving care? How have you
felt its trouble and burdens? How have you experienced its benefits?
What do we need from ourselves, our caregivers and our world
to more authentically care for others and practice what Mairs'
calls the nourishment of the soul?
What makes it difficult to ask for care or accept help? What
is at stake for us personally?
What are the rewards of allowing ourselves to be helped? How
can we become more gracious acceptors of other people's aid?
Large Group Discussion: Blending
the Personal and Social Contexts (30 min.)
Our cultural myths and mores of independence are tied in with many
beliefs about accepting care from others, and the social and political
landscape often reinforces the idea that dependence is akin to worthlessness.
Nancy Mairs writes:
The dread of being a burden-physical, financial -on those
one loves can only be inflamed by lawmakers with fat wallets
and excellent health insurance who feel free to slash medical
care for the elderly and people with disabilities in order to
reward guess who? -people with fat wallets and excellent health
insurance. . . . Such measures reflect the attitude that those
of us who require care constitute an intolerable burden upon
society, that we have nothing to offer to the human project,
that we are, in fact, not worth taking care of. This implication
breaks my heart. I am reduced to a vortex, sucking in the resources
of all around me without replenishing them in kind. (p.76)
In the large group, discuss the following questions, encouraging
people to draw upon their personal experiences.
What social structures and cultural values make caregiving difficult?
What social supports would increase our capacity to give and receive
care?
Where do we notice social messages that present people who are
largely taken care of as burdens? In what ways do our personal
actions contribute to this message? How could we (personally and
societally) better value and appreciate their contributions?
How can we better live out the Unitarian Universalist values
of recognizing human interdependence and mutuality?
Nancy Mairs suggests that one reason nondisabled people avoid people
with disabilities is to avoid also an encounter with their own limitations.
She writes that
the people who seem most hostile to my presence are those
most fearful of my fate. And since their fear keeps them emotionally
distant from me, they are the ones least likely to learn that
my life isn't half so dismal as they assume. (p. 102)
The fear of loss haunts many of us.
Describing the emotional landscape of loss, Mairs writes that
anguish is, after all, a predictable response to loss of any
kind. What has surprised me, all the way along, is how little
self-pity I've felt. . . . Here I was, after all: an attractive
young woman of intellectual and artistic promise, with dependent
children and a vigorous husband, cut down, platitudinously enough,
in my prime. Here I am now, a quarter of a century later, prime
well past, hunched and twisted and powerless but for two twelve-volt
batteries beneath my ass. Woe is me! Except that, on the whole,
woe isn't me. (p. 31)
Invite participants to journal about a loss that they experienced.
Tell people that they won't be required to share their writing.
Write and reflect on a time when you experienced loss. Explore your
own emotional landscape, both at the time and upon later reflection.
What personal resources did you discover during the experience?
After journaling, separate into small groups to share and discuss
your reflections.
Invite people to read from their writing in small groups or share
their thoughts. Groups might also discuss Nancy Mairs' reflection
on her losses, and the different ways that people with different
types of disabilities adapt to loss and change. (See pp. 28-29)
Large Group Conversation: When Woe Wasn't
Us (15 min.)
While narrating the ways in which many people with disabilities
respond to change and adapt to the physical circumstances with resourcefulness,
Nancy Mairs writes that "what most people don't realize is
that they would do it too."
In the large group, share reflections from small groups and
other thoughts on:
the ways of distancing from disabled people, in order to avoid
an encounter with loss or risk, as Mairs says, "identification
of their own lives with a life that dismays and perhaps even disgusts
them."
the capacity within us for finding resources to cope with difficulty,
fear or loss; and
our own "adventure stories" which remind us of the
capacity to respond to change and difficult circumstances with
ingenuity, resourcefulness and grace.
Tell the group that one of next week's activities will involve
discussing and critiquing common ways disability is represented
in popular culture.Ask them to bring in some source material-advertisements,
images, written descriptions or other places where people with disabilities
appear. Medical advertisements, telethons, inspirational literature,
and charities often provide prime source material for representing
disability.
Closing Reading
Thank the participants for their presence and participation.
Close with reading #696 from the UUA Hymnal (Singing the Living
Tradition) or another reading of your own choosing.
Materials: Newsprint, markers, masking tape, chalice, candle,
matches, UUA Hymnal (Singing the Living Tradition. Boston:
UUA, 1993), paper, pens, photocopies of the Participant Evaluation
Form
Opening Reading and Check-In (10 min.)
To open this session, light the chalice and share reading #463
from the UUA Hymnal (Singing the Living Tradition) or another
reading of your own choosing.
After the reading, ask people to go around the circle and share
briefly.
Large Group Exercise: Representing Disability
(30 min.)
Share the popular representations of disability that the group
gathered. Discuss and critique them according to Mairs' writing,
looking for signs that emphasize or play on nondisabled people's
pity, revulsion or fear. Where do the advertisements or stories
indicate tragic tales, messages that this is a life not worth living,
or inauthentic bravery and courage? Are there places were the representations
suggest more authentic stories?
If you need more material, turn to the stories in Mairs' book.
You might try John Hockenberry's airline story on p. 71, George's
mother's desire to get away from the retirement home on p. 100,
or the chapter, "Getting Byrned (pp. 146-169)."
This exercise can also be done in small groups, with groups coming
back together to share their reflections with the large group.
Exercise: Social Construction of Disability (35min.)
The definitions of disability and impairment are shaped deeply
by our social contexts and circumstances. Apart from the physical
circumstances of our bodies, people often become more or less "disabled" based on the structures that support us-or fail to. Nancy Mairs
writes that,
The world as it is currently constructed does not especially
want-and plainly does not need-me in it…. As a disabled
woman, I find that my physical and social environments send
the message that my presence is not unequivocally either welcome
or vital. I am not looking for reassurances just now. I want
to change the world. (pp. 87-88)
While we tend to think of disability as obvious and are less likely
to question who belongs in the category of disabled, what constitutes
a disability is actually profoundly affected by the built environment
and our created cultural assumptions of normalcy.
Ask the group to consider the following statements. Read them
slowly, allowing a pause for silent reflection after each.
Who would be disabled/handicapped if...
if our lives required us to walk five miles every morning and
evening for fresh water?
if instead of a voice telephone, we communicated through silent
images?
if all doorways were three feet wide and three feet tall?
if no furniture or chairs were provided in public spaces?
if our safety depended on our ability to climb trees?
if there were no lights or windows in public buildings?
Make up your own questions if you wish. Encourage the group
to add questions of their ow n . After the exe rcise, turn to a
neighbor and discuss:
What was your reaction to the exercise?
Which of these (or other) imagined social factors make you more
or less disabled?
Return to the large group and discuss:
What social factors pose the most trouble for Mairs, for you, or for
people that you know who have disabilities? How is what we call "disability" affectedby the world in which we live?
One of the privileges and powers of belonging to the nondisabled
norm is the capacity to pass judgment on other people's lives, to
decide that certain fates are obviously tragic and to en-deavor
to spare people from their own suffering. Nancy Mairs observes the
dangers in abortion to prevent children from being born with disabilities
and the right-to-die movement, writing that
the social construction of disability which makes me uneasy
about urging abortion to prevent defective children disturbs
me here, too. Behind the view of death as a right to be seized
and defended lurks the hidden assumption that some lives are
not worth living and that damaged creatures may be put out of
their misery. (p. 120)
We are presented with many images of what makes life worthwhile-some
that flow from our own hearts or spiritual sense, some that come
from a culture that celebrates values we might not espouse.
Engage in a group brainstorm for about 10 minutes, asking for
a volunteer to record responses on newsprint.
What are we told makes "a worthy life?" What are the
signs of a "life worth living?" From where do these
messages come?
After the brainstorm, split into small groups for about 10 minutes.
How do you react to these messages? What do you believe makes
a life worth living?
Return to the large group and share responses.
If you wish, you may find it appropriate to discuss Nancy Mairs'
concern for the respect of disabled peoples' lives and contributions.
She writes,
We can ill afford to kill off our geniuses, and every live
birth holds such promise. [People with disabilities] will weave
into the social fabric important strands of tenacity, patience,
and ingenuity. We will all be glad they were born, I think.
We will be glad they chose to live on. (p. 123)
At the end of her book, Nancy Mairs writes of finding an old English
castle largely inaccessible, and discovering only one room that
she could reach. She says,
I can huddle in it grieving over the rare and fabulous silver
furniture the others will see upstairs in the King's Room without
me. Or I can contemplate the ancestral portraits all around
me, the elaborately ornamented oak screen at one end, and, when
I've looked deeply enough, wheel out into the Green Court to
bask in the rare bit of English sun, dreaming that Vita Sackville-West
and Virginia Woolf once walked by this very spot, heads together,
arms entwined, their laughter fluttering through the gate and
out into the deer park beyond. Only one of these options will
bring me joy. I choose joy.
In the closing circle, invite participants to share a time when
they chose joy.
Closing Reading
Thank the participants for their reflection and for their sharing.
Close with reading #507 from the UUA Hymnal (Singing the Living
Tradition) or another reading of your own choosing.
We would like to thank the following people for their support on
this project:
Devorah Greenstein, Julia Watts and Sofía Betancourt of
Starr King School for the Ministry; Helen Bishop; Advisory Committee:
Donna Bivens, Co-Director, Women's Theological Center; Rev. Nancy
Bowen, Clara Barton District Consultant; Rev. Marjorie Bowens-Wheatley,
Adult Programs Director, UUA Dept. of Religious Education; Jacqui
James, Anti-Oppression Programs and Resources Director, UUA Dept.
of Religious Education; Rev. Meg Riley, Director of UUA Washington
Office, Dept. for Faith in Action
We are grateful for assistance from the New Hampshire Vermont,
Pacific Northwest, Thomas Jefferson, Joseph Priestley, Pacific Central,
and Northeast Districts and for support from the Unitarian Universalist
Veatch Program at Shelter Rock.
For further reading we recommend the following books by Nancy Mairs: Carnal Acts: Essays (1996), Remembering the Bone House:
An Erotics of Place and Space (1995), and Voice Lessons:
On Becoming a (Woman) Writer (1994)
Beacon Press is a department of the