It was a November evening, 1982, while my husband, Burton,
and I were delivering Thanksgiving baskets in downtown Dubuque when I suddenly
felt overwhelming fatigue. I became ill with what at first seemed like flu but
from which I never recovered. The illness, later diagnosed as myalgic
encephalomyelitis (CFS), has many physiological and neurological complications.
Today, still with no known cause and no known cure, it affects hundreds of
thousands of people worldwide.
I have a disease; I am not my disease. How do I mark the 30th
anniversary of living with a chronic illness?
With sadness or celebration? A good way is to have a convocation on
“Living in community with Our Abilities and Disabilities.” Many people with CFS
become homebound, isolated, but supported by the caring and respectful community of Wartburg Theological Seminary, I have been able to continue fully serving here and in the broader church and world.
Once a month for many years Wartburg holds a convocation,
following a shortened Thursday worship service. At the November convocation student
speakers were people who have some sort
of disability, or who have a friendship with a person who has a disability. Lisa
Heffernan, WTS M.Div. Senior began, “We
share these stories and perspectives to encourage the community to think about
how we all live together in this community as people with and without
disabilities. Our definition is broad: we will be talking about disabilities in
terms of physical and visible disabilities (like mine), physical disabilities
that are unseen, and disabilities or conditions that can either be considered
mental, cognitive, or emotional. Not only that, but we will be also talking
about specific issues that come along with different disabilities and how we
might view them within our life together at WTS. The question we might consider
is: How do we as a student body, staff, and faculty live together faithfully in
this place, with our gifts and limitations, recognizing each person as a child
of God and a vital part of the body of Christ?
My own experience and view as a person with a physical and
visible disability has greatly changed and improved since coming to seminary.
In this place, I am accepted and valued as the person God created me to
be—completely and fully. Before coming here, I never had the experience of
being in a community where people would seek to have me involved in all aspects
of life, no matter how tricky doing so might be. The best brief examples I can
give are the time that my class was having a gathering at Pulpit Rock our middler
year…on the 2nd floor. Without me even having to ask them to do so,
4 of the guys in my class lifted me up those steps, just so I could be there
with my class. I was scared, but they
wanted me there, and I wanted to be there. So they helped me out. The other
side of this is that these same friends challenge me to be more fearless and
independent. This is the same thing I hope I do for them. We care for and
challenge one another. And we include one another in all areas of life here.
There are things that are difficult to make that happen sometimes, but I’m
finally in a place where my disability doesn’t feel like a barrier to having an
active life.”
Aleese Kenitzer, WTS M.Div. Junior, continued: “I have a significant hearing loss in my right
ear. It has been my responsibility to assure that my disability does not affect
me in school or in ministry, but it is extremely helpful when people are aware
of the fact that I do not hear well, and make an effort to improve
communication. But often, I have either witnessed how people do not understand
how an impairment affects one’s lifestyle, or have witnessed the response of
'well, people need must scream for you to be able to hear.' Neither
one is true, and both of these actions exclude those who cannot hear well. It
is common for those with hearing impairments to be excluded because they cannot
hear and understand what is happening around them, or excluded because of those
who overcompensate.”
Dave Fier, WTS M.Div. Junior came next, “I have a genetic learning
difference called Soto’s syndrome. I
was blessed to be my current height of 6ft 4inches in fifth grade I haven’t
grown since. One of my many
challenges is it takes me along time to process information. “Fear not,” I say. This difference has also
affected my coordination and some of my physical abilities. “Fear not,” I
say. Another difference I have been
blessed with is to have a heightened emotional and artistic sense. “Fear not,” I say. God blessed me with this difference and I
wouldn’t have life any other way. Most
importantly I am child God. I am a
brother in this community of many. The
real question is how can we all learn and grow together.”
Tami Groth, WTS 2nd year M.A. Diacaonal Ministry,
lives with two disabilities: “My medical history includes both clinical
depression--a chemical imbalance which impacts both your emotions and your
ability to think correctly--and celiac disease, an auto-immune disorder where
gluten, found in wheat, rye, and barley, attacks my body. These conditions are
not related, but their effects can compound one another. When you cannot
automatically join in something as basic as sharing bread with others, it is
easy to feel isolated, and isolation can make you wonder if depression is
returning.
I fight these issues by creating inclusive community however
I can: by making food I can eat to share with others, by meeting others in
their own needs, and by sharing what I have learned as I have educated myself
about my conditions. Sometimes accommodating everyone’s needs seems like more
than we can cope with--the list feels endless. But the joy of seeing someone
feel like they can now be a part of a community is boundless, and it always
makes me determined never to assume that what works for me works for all.”
Lee Gable, WTS M.Div.
Senior, added, “ My
friend lives with multiple chemical sensitivity related to fibromyalgia plus
complications. The air she breathes and
any surfaces or fabrics she is in contact with are potential sources of
pain. Even your hand lotion can affect
her. She must be aware of what is around
her. She uses air purifiers to hold back
the multiplicity of scents and carefully researches and uses products to help
her environment not be a source of pain.”
If you don't
see her in church, ask about what is
going on or send a card. Ask the her if she wants to be on the prayer list. Please don't be offended if she has to get up
and move away from unseen conditions that cause unseen pain. As a child of God living with conditions she
would not have chosen for herself, my friend only asks, 'Don't define me by my
illness.'”
So how can we be compassionate,
accommodating others, without being exclusive?
Megan Reedstrom, WTS M.Div. Senior, concluded the presentations. “I
have been asked to talk about friendship because I have the pleasure of calling
Lisa Heffernan one of my very best friends. Through our friendship I have
become much more cognizant of accessibility and its importance and how
frustrating it is when people abuse or misuse things like accessible parking.
And through two road trips we have taken together, I've learned that traveling
with someone who uses a wheelchair is not that different than traveling with
someone who doesn't. We just allow a little extra time for travel, and do a
little extra planning to make sure the places we are headed are accessible. The
most important thing I have learned in all we have done together as friends is
that we are far more alike than we are different.”
Many
graduates of Wartburg and all of our seminaries live with disabilities and
serve throughout the church in the world. Some are:
Rev. Phil Wangberg, who uses a wheelchair due to
cancer of the spine, is pastor of All Saints Lutheran Church, Albuquerque, NM.
Diaconal Minister Rich Mohr-Kelly, who is visually
impaired, serves in Pittsburgh, PA neighborhood ministry and at Stewart Avenue
Lutheran and Birmingham UCC Congregational Churches.
Rev. Kathryn Bielfeldt, who is blind, served for
over 21 years as pastor of St. John’s Lutheran Church of Campbell Hill, IL and
added on part-time service to 2 other congregations in the Wartburg Parish of
Southern Illinois. She recently retired.
Rev. Chris Kinney, who has quadriplegia due to MS,
Oakdale, MN, currently does supply preaching, advocacy, mentoring, and
short-term counseling
Now you are the body of Christ and
individually members of it. (1 Cor. 12:27)
After
the brief presentations, students, faculty and staff of the whole community
engaged for most of the hour in conversation around tables addressing these
questions:
Questions
for table discussion:
1. What
is your personal experience and/or experience with others who may have
disabilities of various kinds?
2. What
do you think “living in community with our abilities and disabilities” looks
like?
3. How
are disabilities perceived in the church today? Are some disabilities more
“acceptable” than others?
4. How
might a disability (seen or unseen) isolate us or others as we try to live together
in community?
5. What
sort of language is helpful (or not helpful) when speaking about persons with
disabilities?
6. What
good things have you seen churches do to work toward the inclusion of people
with disabilities in communities and/or congregations?
7. How
can we as a community work toward openness and full accessibility? Not because
we “have” to, but because we want to
include all of our brothers and sisters in Christ into the life of this
community and the wider Church.
Some
helpful resources: (provide
by Josh Melvin, WTS, 2nd Year M.A.)
“Hearing DISability, Seeing disability”
by Josh Melvin http://archive.constantcontact.com/fs064/1102843057919/archive/1110800107155.html
Avalos, Hector, The Abled Body: Rethinking Disabilities in Biblical Studies,
Society of Biblical Literature, 2007.
Bishop, Marilyn E., Religion and Disability: Essays in Scripture, Theology, and Ethics,
Sheed & Ward, 1995.
Black, Kathy, A Healing Homiletic: Preaching and Disability, Abingdon Press,
1996.
Block, Jennie Weiss, Copious Hosting: A Theology of Access for People with Disabilities,
Continuum, 2002.
Carter, Erik W., Including People with Disabilities in Faith Communities: A Guide for
Service Providers, Families & Congregations, Paul H. Brookes Pub. Co.,
2007.
Cone, James H., God of the Oppressed, Orbis Books, 1997.
Creamer, Deborah Beth, Disability and Christian Theology Embodied Limits and Constructive
Possibilities, Oxford University Press, 2009.
Eiesland, Nancy L., The Disabled God: Towards a Liberatory Theology of Disability,
Abingdon Press, 1994.
Eiesland, Nancy L., Human Disability and the Service of God: Reassessing Religious Practice,
Abingdon Press, 1998.
Ferguson, Danyelle, & Parsons, Lynn, Disabilities and the Gospel: How to Bring
People with Special Needs Closer to Christ, Cedar Fort, Inc., 2011.
Govig, Stewart D., Strong at the Broken Places: Persons with Disabilities and the Church,
Westminster John Knox Press, 1989.
Pinksy, Mark I., Amazing Gifts: Stories of Faith, Disability, and Inclusion, The
Alban Institute, 2011.
Reinders, Hahs S., Receiving the Gift of Friendship: Profound Disability, Theological
Anthropology, and Ethics, Wm. B. Eerdmans Publishing Co., 2008.
Reynolds, Thomas E., Vulnerable Communion: A Theology of Disability and Hospitality,
Brazos Press, 2008.
Shapiro, Joseph P., No Pity: People with Disabilities Forging a New Civil Rights Movement,
Three Rivers Press, 1994.
Waters, Larry J., Why, O God? Suffering and Disability in the Bible and the Church,
Crossway, 2011.
Webb-Mitchell, Brett, Beyond Accessibility: Toward Full Inclusion of People with Disabilities
in Faith Communities, Church Publishing Inc., 2010.
Yong, Amos, The
Bible, Disability, and the Church: A New Vision of the People of God, Wm B.
Eerdmans Publishing Company, 2011.