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.
The ELCA’s Social Message on Disability: http://www.elca.org/What-We-Believe/Social-Issues/Messages/Human-Disabilities.aspx
“Hearing DISability, Seeing disability” by Josh Melvin http://archive.constantcontact.com/fs064/1102843057919/archive/1110800107155.html
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